Anyone had a urethral diverticulum?

[YarnObsessor]

After months of worrying about a lump in my vagina I’ve finally been told that the mri showed that it’s a urethral diverticulum, well two to be precise and gynaecologist has referred me on to urology to plan a surgery to remove it as it varies in size but when it’s larger I can’t wee as it pretty much blocks the tube and I can’t ride a bike or sit comfortably on hard chairs etc as it’s really painful.
Has anyone had one before?
Has anyone here had the surgery before?
It’s near on impossible to find any info on it because apparently it’s not very common and even rarer that it’s properly diagnosed I’m really stressing out about the surgery, I’ve never been under a general anaesthetic before and supposedly it’s two weeks with a catheter after.
I have a six year old ds (nearly 7) with asd and dh works long hours I don’t know how I could cope and I’m the only one in the house who knows how to cook (dh tries but he’s a terrible cook!)
I need to stop googling because it’s just making me more anxious and the gynaecologist wasn’t exactly helpful just kept saying I needed to talk to the urologist when I see them but it’s the nhs I have no idea when it’ll be! I had the mri in March and only got the results on Thursday!

Hi - not exactly the same but I recently had a urethral prolapse and surgery to fix this. I had a catheter in for two weeks after. What particularly are you worried about, can I answer any questions? Urethral issues like this are very rare, I couldn't find much online.

Also not exactly the same, but have urethral problems as well - self catheterise regularly to maintain 'open' tube. Mine is abnormally small (stenosis), has a stricture and it's 'misplaced' , too far into vagina. Thought to have fowlers syndrome affecting urethral sphincter too.

I've had 'surgery' to my urethra (widened somehow) and a cystoscopy, due another pretty soon.

Also couldn't find a thing online, just keep getting told its a one in thousands thing for women to have urethral issues barring childbirth or spinal cord injury.

Catheter wise you'd be surprised how quickly you get used to it, they're uncomfortable at first but positioning helps and loose pyjamas, baggy trousers etc. They're a bit more discrete than you'd expect too, I've gone shopping with one in and no-one knew.

If you can get a special lock fastener for your leg (will find a link) they're good too.

I’m scared of how much it’ll hurt to get the surgery, how long I’ll be in hospital and I’ve no idea what it’s like to have a catheter and how to empty it or can it fall out and leak?
I know if the surgery goes ahead the hospital will tell me all this but I suffer from anxiety and it’s all freaking me out at the moment, last the gynaecologist told me was it was probably a cyst that would need to be lanced and now it’s this scary sounding thing I’ve never heard of that no one I can find seems to have gone through.
I don’t know if I’m more scared that I’ll go to the urologist and they’ll say they’re doing the surgery or that I’ll see them and they won’t do it.
Apparently they can conceal cancer too and need biopsy when removed.

It’s a really horrible thing too, when it’s full I can feel it all the time it’s like holding a cherry tomato in the opening of my vagina. But it’s worse when it empties, it did this morning, it holds urine and sometimes pus inside and it’s emptied itself a couple of times since I first noticed it and it doesn’t hurt it’s just a weird feeling and stinks, when it emptied today there was blood too.

It is quite painful but they will give you plenty of pain relief - I went home with oromorph and also sleeping tablets as the catheter irritated round the sutures.

They will explain exactly how to deal with the catheter and district nurses can come if you need.

Emptying the bag is really easy - I had a small leg bag during the day that you didn't notice underneath clothes (I wore my pajamas round the house anyway) and a big night bag on a stand that was easily attached to my leg bag.

Don't panic, get as much info as you can from the health professionals.

I'm only 28 and this happened out of the blue so was a shock, I understand how worried and anxious you must be.

@YarnObsessor sorry I know this is an old thread but I think I also have this therefore please can you advise how your surgery went and if you have any reoccurring problems ? Thank you. Really worried.

Hi, I just wondered how you got along with this. I’ve been told I have this too. Feeling soo anxious about the whole thing.

@786Smiles hello there! Sorry to hear you’ve joined the UD club. I was diagnosed about a year following after finding it in pregnancy. Fast forward to now and I am 6 weeks post surgery and doing ok. Happy to answer any questions but there is a Facebook group specifically for UDs and those ladies are a wealth of info and support because this is rare there actually isn’t much online. Sending a hug coz I know how much of an anxious time it is x

Thank you sooo much for taking the time to reply. I also discovered this during my pregnancy. I am currently waiting for surgery at UCLH. The waiting list is very long apparently. So won’t have surgery till next year. I don’t know if this is something I can even afford to get done privately.

Could I ask was your surgery under the nhs? How long did you have to wait to be seen?

Its great to hear your doing well post surgery. How long is the recovery period? I’m anxious about all of this.

Ill have a look for the UD Facebook group. Thank you for the recommendation.

take care x

So I had my initial appt at a Manchester NHS hospital in February with a consultant who specialises in them - although she hasnt done loads and loads coz it’s so rare only a handful a year. Back then she said she could schedule me in for 12 weeks but I explained I was due to get married in April. So we all decided it would be best after the wedding and honeymoon. Fast forward to July and my appt came through for a consultation and pre-op for a surgery in august. I was asymptomatic apart from a mass so I was super nervous about the surgery. Afterwards I had a catheter in for a week. Now this was something I honestly dreaded but it nowhere near as bad as I thought. It’s not ideal but it’s also not so bad either.
Recovery wise, I’m still not 100% and I get the odd twinge and achy if I do too much but at this point I may still have a few stitches. I was told no lifting or driving for 4 weeks. Super awkward with a toddler but we’ve managed 😊
do you have many symptoms?

Thank you for sharing your experience. It’s given me some hope…

So I had this bulge, which after the cystoscopy (camera test of bladder) I feel has burst (as I no longer can feel it - this is just my assumption). Prior to the cystoscopy the lump was tender and uncomfortable but not particularly painful, but since this procedure I am in pain daily. Peeing hurts, feels like a urine infection but no infection. Sometimes I feel like I dribble, I wear pads to be safe.

it’s so good to hear you were seen to quickly.
I just can’t believe I need to wait so long to get this operated on. Nothing sooner then June next year. What scares me is that it will become something more sinister. Apparently a very small chance sometimes the mass can conceal cancer - although the consultant I spoke to on the phone didn’t seem too concerned about this but my anxiety levels are high 😞

Did you require bed rest for a good few weeks? Is there any follow up?

xx

It can burst. Mine emptied a couple of times prior to the op.
I hope your symptoms subside soon, how long has it been since the cystoscopy? I had one too but they did it whilst I was under general so thankfully don’t remember it.
oh wow, June next year. Gosh that is a while off although, it is a sensitive area so you want someone who has done a few before and is experienced. I was referred to a hospital in Manchester but I live an hour away.
I understand your anxiety, I mentioned the cancer risk to my consultant but she wasn’t concerned and explained how rare it is. I think I read somewhere is a 10% increased risk. After surgery I understand it was sent to pathology to check everything but I’ve not heard anything so assume all ok.
I didn’t get out of bed for the first 24 hours (I had to stay in hospital a night) not sure I could’ve done but the next day I was up on ward and had a shower. Each day got easier but for the two weeks I was off work I mainly just chilled on sofa. My follow up is on Monday so I’m hoping and praying everything is ok xx

I hope your follow up on Monday goes really well and that it’s the end of this chapter for you!

It’s such an isolating issue because it’s so uncommon and unknown. it’s been so nice to actually have someone to talk to about this.

Im dreading the actual surgery but at this moment in time it’s so far off I’m just trying to find ways to handle the everyday pain. It really does affect your quality of life.

Can I ask what type of symptoms you had?
X

Honestly you can message me anytime, I wish I’d have had someone I could ask questions to. It would’ve really helped my anxiety.
my only symptom was the mass and if it was large it was uncomfortable but that was it really. On that FB group there’s women with so many different symptoms.
I have mixed feelings about my follow up, on one hand I’m glad I’ll be reviewed but I’m nervous of any problems. X

Thank you so much that’s really sweet. I really appreciate it.

I can imagine it must be nerve racking having this check up coming up. Will be thinking and praying it all goes well for you. Hopefully it will just confirm that you’re making a good recovery.

Ive found a group on Facebook and have requested to join… waiting to be accepted

Hoping your follow up went well? X

@786Smiles thanks for checking in :) it went well thanks. I still have some stitches but they can take up to 12 weeks to dissolve apparently. I’m also feeling a lot more normal now and hardly any aching or anything. I’ve now been discharged but on a system whereby I can self refer with any issues over the next 12 months! How have you been getting on?

Hey that’s great. I’m ok. Just managing my symptoms best I can. X

@786Smiles have your symptoms got any better? I hope they’ve eased x

Since the cystoscopy I am in pain when I pee - feels like a permanent UTI. I find drinking lots of water helps - doesn’t hurt as much. Prior to cystoscopy I wasn’t in pain :-(.

Thanks for asking x

Hey, hope you’re well. I haven’t even got my date for surgery yet but I’m so nervous about having a catheter for three weeks. How do you function with a catheter :-( how was your experience? What happens if it comes out? X

@786Smiles hey, this was my fear post surgery - I wasn’t bothered about pain, I was worried about the catheter. Although, my sister is a nurse and has done 000s of catheters for people before and she reassured me it wouldn’t be so bad - I honestly didn’t believe her. As it turns out she was right! Yes it was uncomfortable and awkward but it wasn’t painful (even removal) or anything like that. I had what was called a flip flow catheter (might be something to mention to your consultant). It meant that during the day I wasn’t attached to a bag. My catheter had a valve so basically my bladder would fill as normal and I would feel the normal urge to pee so I would go to loo and turn the valve into the loo. This gave me so much more freedom and movement esp after those first couple of days when you don’t move much anyway. Also a lot better with a toddler in case of any pulling 😵‍💫 At night I would connect the bag. I was also convinced removal and my first wee would be terrible but neither hurt at all. I imagined it be like post birth first pee 😳! Stool softeners are a must though esp for those first few days.

the catheter is held in by a tiny balloon of water so I think it would be unlikely to come out. If so I presume they’d just pop another in.

Rightly or wrongly I had my catheter for a week. I had read most people had them a lot longer than me so I was nervous about that but when I questioned the Dr she said they like to remove them as soon as they can as they can be a risk of infection. I went to a urology specialist hospital with a dr that specialises in them so I just had to trust her.

hope this helps. Xx

Hi,

yes that definitely is reassuring. Thank you. It’s given me hope. I just can’t wait to get this nightmare over with x

Hi, I don’t know if you’ll check this post but just incase I wanted to let you know I’ve got a date for surgery!

reading your posts have really helped.

I will definitely get myself some stool softeners.

I’m worried coming on my period during that time. I’m contemplating taking the contraceptive pill to stop it. I will seek advice form doctor. I’ve suffered from infertility in the past so don’t really want to mess around with my hormones. 😫

how have you been holding up? Fully recovered now? Hoping you’re doing well x

@786Smiles hello!

ahh I’m so glad you’ve got your date, is it next year? Also glad my posts helped too.

I came on my period about 10 days after surgery and it was annoying but managed it ok. You will bleed after anyways so tmi but I wouldn’t have known the difference. I personally wouldn’t take the pill just for that short amount of time although there is another type of pill that can pause your period for a few days, I forgot the name but I took it whilst on honeymoon and my period returned as normal a few days after I stopped taking it.

I’ve been doing ok thanks and I feel normal! 😊 so far so good! X