Constant urge to pee!

[WHW123]

Hi

Really hoping someone has a success story.

So I had a baby 10 weeks ago and all was fine, all very straight forward.

Anyway after 3 weeks when i started feeling like I had the start of cystitis but only on walks. I ignored it thinking it'd be everything adjusting.
But by 5 weeks it was this need to wee all the time! Handed a sample in to GP who dip it and it was clear. I know someone who works in gynae who got me an appointment to be checked over there as was such a horrid feeling!
Anyway was checked very slight bladder prolapse but what she'd expect to see at 6 weeks postnatal. Urine was dipped and had all sorts in so was started on antibiotics. Urine came back pos but antibiotics didn't work so my GP put me on fosfomycin twice which eased the symptoms but didn't go.
At my 8 week check I told the GP I still had symptoms, he sent another sample (on dip it had blood in it) but came back clear.
Was seen by gynae again, dipped urine - had white blood cells and blood in it. Sent away and was negative.
She did an internal examination, prolapse gone, and no understanding of why symptoms continued. She's tried me on some long term preventive antibiotics - they've done nothing so far ( nearly 2 weeks in) and gave me estrogen cream, as I highlighted breastfeeding can mimic perimenopause. (But then I've read I shouldn't take that as can effect breastfeeding). She also queried painful urethra syndrome but I'm not convinced. As it's my bladder.

I literally go to the loo and the only relief I get is when I pass urine. Then after it's the worst need to go again - I don't! I was going to toilet more than I used to and with the actually uti I tried increase fluids to flush it. Anyway I know I don't need a pee, and avoid going for a few hours at a time.

She's giving me a call this week for an update. And I was going to ask about being seen my urology? I can't stand this, I just want to enjoy my little boy. If lockdown wasn't bad enough with this on top. I've never had any health issues before. Wonderful pregnancy and birth.

Could it be breastfeeding and low estrogen?
Or is it painful bladder?
Anyone had any experience with please tell me happy endings. I'm driving myself mad looking online. See old posts like this but then no endings of what happened.

Thank you!

[WHW123]

Also I am seeing a private physio - thanks to Covid nhs gynae physio is closed. As I worried about prolapse. I'm having to do downtraining excercises as I do have tension on my pelvic floor. So been told not to do kegals at present.

[YouMaySayImADreamer]

I had this exact thing after my first baby and mine may even be one of the old posts you have read. It really tormented me and I felt the same as you that I couldn't enjoy my baby. I was very distressed by it. It was also brought on by walking, or at least I felt I couldn't walk far because of this constant feeling of needing a wee.

I did see urology and gynae as well. Urogology found nothing other than mild prolapse and slight stress incontinence (unfortunately for me that has persisted but 2 more babies later hasn't got worse). I also had physio until my little boy was just over 1 which did help a lot with the sensation.

The gynae told me that breastfeeding could make the vagina menopausal and I was hugely relieved to hear that I could expect a lot of improvement once I stopped. There is info about lactational vaginal atrophy online, which like menopausal VA, causes urinary symptoms. I am certain that this is what I had. Weirdly not many healthcare professionals seem to know or talk about it. The gynae gave me oestrogen cream but like you I was worried about the effect on milk supply which I was already struggling with so I never used it. My symptoms did ease significantly (and gradually) into my little boy's second year. I completely stopped thinking about it which I never thought possible.

I didn't experience it at all with my second child. Hope this helps

[WHW123]

@YouMaySayImADreamer thanks for replying. When did you stop breastfeeding your first? And was it from that point it started to improve? Did you find any ways of easing it too.
And did you breastfeed your second?
Hope you don't mind me asking.
This is just torture, my gynae atm just seems to say I'm a mystery. She's ringing me tomorrow or Friday, so going to ask about being referred to urology just to make sure everything is okay.

[WHW123]

@YouMaySayImADreamer I had a notification in my iPhone you'd replied but when I've open the post, it's not there. Not sure why? If you don't mind repeating your previous comment.

[YouMaySayImADreamer]

No problem. I stopped bf my first at 13 months and yes I did bf my second for a lot longer than this as well although strangely had no issues second time. I noticed a gradual improvement from when my periods returned at 9/10 months and then a bigger improvement from when I stopped bf - not exactly sure when but I guess I gradually stopped thinking about and feeling it until it got to the point I forgot, which I had never thought would happen. I had also been suffering from horrible heavy, bulgy, aching feelings down there. I think it was a combination of the feelings easing off a lot, and me getting used to a new normal - I know the second bit probably isn't what you want to hear but it does get to a point where it no longer consumes your thoughts I found.

Some things that helped:

• Time and probably just a little or even a lot more time than average, but for me I believe it was hugely hormone and bf related.

• Physio along with natural strength returning over time. Although I believe it was mostly VA caused by low oestrogen, this can also cause pelvic floor laxness which worsens symptoms I believe. Doing regular pelvic floors, though not immediate relief, also made me feel in control.

• The urologist suggested that I needed to retrain my bladder and that there could be an element of me being so afraid of needing the toilet that I had got into the habit of trying too often. She suggested retraining my brain/bladder by trying to go longer and not going until I was sure I actually needed to. Also reducing caffeine which irritaeltes the bladder. I think these two things contributed in lesser amounts but again helped me physcologically at the time and are worth trying.

• Rest when you need to and don't push yourself. I remember the physio saying to me that it was a muscle weakness/injury that should be treated as such like any other. It really helped me to think of it like this and to give myself permission to rest rather than carrying on and hoping it would disappear. If my symptoms were particularly bad, I sat down and put my feet up as much as I could and I also avoided heavy lifting. I felt a bit pathetic doing this at times, but I really wanted to feel normal.

[WHW123]

Thanks @YouMaySayImADreamer that's really useful! And how amazing are you coping for all that time. Stronger woman than me.

I planned to mix feed at one point so perhaps it'll have to be sooner than I hoped.
I love breastfeeding, took awhile to get here - i find it just convenient, bonding etc. So it's sad that the journey may end sooner than I planned.

Did you find it felt similar to cystitis? I just feel my bladders never empty, and when I pass Urine, that feeling creeps back almost within minutes. It's almost like added pressure on it and a constant almost burn like discomfort - minus when actually peeing! Sorry if TMI!

I don't have any incontinence etc, I did initially but hammered kegals - but then probably too much too soon as now have the tension on the muscle supporting my bladder. So need to down train to then build muscle again.

I've cut out caffeine - gutted as coffee made me nauseous in pregnancy and was so happy to have it back postnatally. And possible food irritants.

Did your have a cystoscopy or anything with urology? And did gynae suggest it could be VT or was it your suggestion?

Thanks for your help

[Lindyskate]

Hi @WHW123, I have exactly this problem. Like you say, it’s torture. It started last March just after my son was born. Got a bit better around 7/8 months, but it persists. I’ve just stopped breast feeding. I’m wondering how your symptoms are now? Have they settled at all? I’m struggling to cope with daily life since walking is excruciatingly uncomfortable. Really hoping for improvement now that bf is done.

[WHW123]

Hi @Lindyskate

Sorry to hear you've also been suffering. It’s a horrible thing to experience, let alone with a new baby too.

It's been some time since my original post which was about 10 weeks postnatal. My symptoms unfortunately continued although have gradually improved, I even now have normal days/weeks and it’s a year since it started.

So I didn’t stop breastfeeding, I underestimated how difficult it was to stop, although I did mix feed. I am still breastfeeding now, although a feed a day if that - it’s more comfort. I still feel hormones have an impact on the symptoms, as things improved more as my cycles returned properly around 10 months. However, I did go on the combined pill earlier but stopped when I didn’t find an improvement.

Have you been seeing physio? If you haven’t I highly recommend you ask to be referred via your GP. Or if you can afford to go private you can find a women’s health specialist physio - the best place to find one is via the nhs Squeezy (then you know they are specialised) www.squeezyapp.com/directory/

I pay privately for physio - initially due to Covid but then as my womens physio is brilliant and worth the money. I learnt I have hypertension on my pelvic floor by my urethra. Before seeing her I was doing kegals religiously worried the symptoms were due to weakened pelvic floor. However, this actually was making everything worse. I do reverse kegals / pelvic floor relaxation.
I also learnt that I can’t (or not yet) doing anything which overly engages my core - sit ups, long runs, etc. As this aggravates the muscle and symptoms. I can also now cardy my son in his carrier which previously I learnt was a trigger. Skinny jeans / tight clothing is a trigger and again this has now improved and I have days where I live in skinny jeans! I’ve been able to start doing small runs and do a big cool down/ pelvic relaxation.
I also receive electronic acupuncture from her which is needles in two point of the leg.

Currently I am under urology as it can be from a secondary reaction. So far findings have been normal in nhs testing.

My wonder is whether it has been painful urethra syndrome - also comes under painful bladder syndrome/interstitial cystitis. Perhaps from lacking hormones which irritated things.
I tried the ‘IC diet’ but found nothing irritated my bladder etc. My urologist doesn’t think so as it’s not bladder pain exactly, and not on filling. I think the best way to describe what I feel is... when you’re dying to pass urine, held for ages, you go, get relief but minutes later that feeling returns. For me it's similar to cystitis symptoms. Not sure if it’s the same for you?
I also think I held for the toilet too long at times, as I hated the feeling after going. Which annoyed the muscle too. But it’s finding a balance to ensure you aren’t going to regular too!

I also have an appointment in July at the Harley clinic for a test for embedded infection - there’s lots of resources online and via social media. However, I am currently debating cancelling as I feel overly the last couple of months things have improved significantly. It’s quite an intense and expensive regime they do.

It’s really important to seek medical advice to ensure you are doing the right things to improve symptoms. Urinary symptoms can be caused by a lot of things.

I’ve learnt my triggers like core engaging Exercise although I’m hoping to be able to start running properly again in the future and return to the gym. I've also suffer from a bad lower back and hips which I assume is all interlinked muscle wise! My plan will also be to start swimming when Covid allows as this is a good form of safe pelvic floor exercise. My physio has been my rock throughout, and has let me bounce ideas off her.

Hope you’re starting to have better days and are on your road to getting answers/help xx

[WHW123]

Another thing I wonder was if the nerves were a cause too. I found walking helped on bad days - which I didn't think initially it did. Poor sitting etc makes it worse for me. I also have a tens off physio which helps with flares for me xx

[Lindyskate]

Hi @WHW123 thank you so much for replying. Yes I’ve been doing physio for a year and I’ve just stated a Hollistic Core Restore programme which I would highly recommend for getting pelvic floor and core back in shape! I definitely agree with you that symptoms vary over the cycle and I’ve said quite often that I feel like it has a hormonal aspect to it. Like you my symptoms have improved gradually over the course of the year, but still so frustrating especially with covid and there being no places to pop in for a pee when you’re out!! It seems to flummox most medics as well which is odd. I saw urology and had mri and cystoscopy but all came back normal! Such a bizarre and horrible problem to have.

[WHW123]

@Lindyskate Out of interest did uro ever give you a diagnosis or ? Diagnosis?
It shows the huge health inequalities in the women's health sector.
Aww brill thanks is that just online? I will have a look.
Did physio find you had any tension etc?
Xx

[Ethelfromnumber73]

I would advise getting an appointment here:

www.tenharleystreet.co.uk/sites/chronic-urinary-tract-infection-clinic-at-10-harley-street

These symptoms need nipping in the bud asap. Believe me, I've been there. They do Zoom appointments by the way if you are not near London (I'm miles away)

[Lindyskate]

@WHW123 no, sadly the urologist just said everything looked normal. I have another appointment with them on Tuesday, so I can let you know if they have any ideas. So far the feedback has just been to do more physio, which is annoying as I have done a LOT of physio!

This is programme I’m doing, it’s online yep.
edinburghwomensfitness.co.uk/classes/holistic-core-restore/

I had some tension in pelvic floor at about 6 months pp and had to do down training. I was like you in that I initially thought the symptoms were from weak pelvic floor so I did loads of kegels. Then had to stop and learn to relax before starting again.

[Lindyskate]

@Ethelfromnumber73 thanks for the recommendation! Did you experience this as well? What treatment did you get? And did it help?!

[Ethelfromnumber73]

I had symptoms from the age of 31, well before pregnancy. The fact you have white blood cells in your pee shows bladder inflammation and the most common reason for that is infection. Did you have a UTI or urinary symptoms in pregnancy that may have recurred ? I had 12 years of symptoms before I got sorted- I'm now on long term antibiotics which have helped immensely. The consultant that I linked to treats this as a bladder wall infection caused by a UTI that has not been cleared properly. Dipping positive for white blood cells and then your sample not growing anything in the lab is characteristic. The fact that you have given birth recently may mean that other diagnoses are also possible/likely but I'm my experience I'd say that the NHS is not very good at treating complicated UTI and if you have one of these, you need it sorting ASAP

[WHW123]

@Lindyskate exactly the same as me! I still have the tension annoyingly too. But it must have improved, it's just being unsure of what's causing/caused it.
Hope your appointment goes okay. Keep me posted.

@Ethelfromnumber73 I've got an appointment in mid July with the profs team - I'm miles away and was told they need to have a urine sample - for microscopic testing. Still debating whether that is the route to go down or not, incase it's not plus the cost and travel is a big factor. Have you found improvement with your antibiotics?

[Ethelfromnumber73]

@WHW123 they literally gave me my life back. Yes, I'd forgotten they need to do microscopy on your first appt. if you are still not okay in July, I really recommend going. Good luck, it's quite unbelievable how much bladder problems can affect your quality of life

[WHW123]

@YouMaySayImADreamer thanks I've read and heard a lot about embedded infections. How long were you on long term antibiotics before you noticed an improvement and are you still on them? Thanks

[Ethelfromnumber73]

I suspect that the tension might possibly be a bit of a red herring and be caused by bladder pain/urgency rather than a cause of your symptoms?

[WHW123]

@Ethelfromnumber73 yeah it's potentially a secondary response. Thought I might get answers from uro but no such luck so far.

[WHW123]

@Lindyskate how did you get on at uro? X

[Lindyskate]

@WHW123 hey, so the urologist did an mri scan and a cystoscopy. Both came back completely normal. No signs of any issues with urethra, bladder, or prolapse. She recommended more physio I’ve done so much physio and my physio says my muscles are strong and that I don’t need to be doing the same level of training anymore.

My GP gave me a medication to calm the bladder (solifenacin) but told me I couldn’t take it until I was done feeding. My son (15 months) self weaned 2 weeks ago and I was about to start taking it. But interestingly I noticed a huge improvement before I even started it. When I discussed with physio she said it could be related to the rebalancing of hormones, especially estrogen. I looked on Google for estrogen levels across the cycle and I’m now at the point where it would be lower and my symptoms are worse again. I’m going to track this for a month or two before taking the meds. Got a GP appointment on Monday too, so will see what she says.

How are you getting on?

[WHW123]

How frustrating for you! It's so weird that women seem to suffer this but be left in mystery.

I've been tracking my cycles too. So the last couple I've found that i flare a week prior to ovulation and it eventually settles. Worse this month than last!
Oestrogen is higher then, but progesterone does rise until after so wondering if the progesterone is relaxing the overly tight muscle .
Did you ever have the likes of uti following birth?
I've also been looking at possibly irritation of pudendal nerve.
I have my uro follow up in a few weeks so will ask loads of q's.
X

[WHW123]

@Lindyskate be interesting to hear your GPs take on it! Have you tried oestrogen cream?

[Lindyskate]

@WHW123 it is really frustrating! My physio had even commented on how little research there is into women’s health issues in comparison to male issues.

I do have oestrogen cream. It was actually the first thing I was given and I’ve been using it since. I definitely notice things are worse if i stop for a few weeks and improve again when I restart.

I’ve been tested for uti several times over the past year but always negative. At one point gp gave me antibiotics anyway just to see!!

I’ve wondered about never damage too but when I look at the symptoms of pudendal nerve damage I don’t have any of them really.

I’ll tell you how I get in with my gp. Let me know how your uro follow up goes. What tests did you get?