Urethra pain

[IvysPoison]

I am feeling utterly miserable and hoping someone can help.

At the start of February I started feeling like I was developing a UTI- constantly needing a wee, sore urethra. I had my urine checked by the nurse and she said there was no evidence of a UTI and booked me in for some swabs to be taken (stds, bv and something else). Anyway, due to various circumstances and my appointment being repeatedly rescheduled, these swabs weren't taken until the end of April. The swabs all came back clear. The nurse then tested my urine again and she said there was a minuscule amount of blood in my urine but not enough to suggest I had a uti but said she would give me antibiotics because I had been suffering for so long. The antibiotics did nothing and my symptoms continued. However, over the course of the following months the symptoms gradually improved (with the odd flare up) and I thought it was getting better on its own. However, it flared up towards the end of my last af and has been unbearable since my af ended four days ago.

The main symptoms seem to be:
A constant burning feeling in my urethra
Constantly needing the toilet
No actual burning when passing urine but it starts again as soon as I've finished on the toilet
A heavy, swollen feeling (on and off) around my vulva all the way to my anus.

I'm feeling so down in the dumps and fed up and just want this horrible feeling to go away. I've got an appt with my gp later this week but just know I'm going to get fobbed off because every time I've ever been to the gp about issues in the vaginal area before I've always been told that "it's just what your body does and it's normal for YOU".

Anyway, has anyone got any ideas what the problem could be, or suffered from anything similar?

I’m Glad they are working for you.

I can’t find a thread, but more usefully here is an interview with one of Prof Malone-Lee’s team on use of oestrogen:

Dr Rajvinder Khasriya, urogynaecologist

The cream is called Ovestin in the UK. Attached is suggested use instructions.

Thanks for all the info
i don’t want it to be Attophy but I do think it is. Constant burning in urethra that was intermittent but now constant. Needing to wee constantly. Doesn’t hurt when I pass urine but starts again after. Does look dry down there. I have noticed a lot less discharge lately.
Ive now been told to take Amitriptyline for the pain but can only take tonight. So another day of constant pain 😭
GP ringing later to discuss me having Oestrogen cream.

I’m sorry you’re having such an awful time, OP. My understanding is that atrophy can be managed well. It’s not the worst diagnosis to receive. Hope your appointment goes smoothly.

Thanks
Gp said I could have the oestrogel
i literally can’t concentrate for the pain can’t stand it 😥i’m worried that it won’t help

Persevere with the amitriptyline and reduce the dose gradually. When you have had so much pain for so long the nerves and the signals to the brain become deranged and it takes a while to reset. You may find that things improve within a few days, but don't be tempted to stop the meds too soon. You will need the oestrogen replacement forever, some GPs don't understand this, so make sure it goes on your repeat Px list.

Vagifem pessaries are great as they are tiny and not messy, you will probably need topical cream as well.

Well I’ve just woken up. 🤔
Amitriptyline must have knocked me right out.
pains still there but definitely easier.
I watched loads of You tube videos last night on Vaginal Atrophy and it was informative. I can honestly say that I’ve never heard of it but it’s so common.
Im hoping that the cream continues to ease the symptoms. I’ve also brought a vaginal moisturiser to use in conjunction.

Do you do any exercise like running or lunges, sit ups, planks etc? Those can all impact the urethra by slightly changing its position as the pelvic floor is involved. Just saying in case you do exercise, you might want to look at which ones you do. Fingers crossed for you the treatment helps.

Watch Elaine Miller on You tube and do your pelvic floor exercises. Once you have the oestrogen and the amitriptyline the exercises really help. She is a pelvic floor physio and is brilliant and very funny.

@Felicity42 No I don’t currently but I used to.
Hoping this treatment works. It’s certainly much more comfortable already.
@endofthelinefinally Thanks I will definitely look at the pelvic floor exercises.

The pain has got really bad again. Just constant urethral pain and burning tingling in vaginal area

@IvysPoison did you ever resolve this issue or get a diagnosis ?

You can try whether D-mannose will do something for you. I am not familiar with products in the UK but you can have a look/ask in the pharmacy. Its a sugar that keeps bacteria from settling on the walls of the bladder/urethra.

It can take 4-6 weeks to repair the atrophy, @Seashellsandsand.It may have been the amitriptyline giving you the initial relief.

Which product did your GP prescribe?

Jumping on to ask if others with these symptoms also had blood in their urine like the OP did?
I am waiting for a cystoscopy after a routine urine test showed blood but no infection.
I don't have any pain when peeing but more vulva pain at other random times, I asked GP if they could be linked and she said no. Hence the referral to urology. Ultrasound showed no problems with my kidneys so I'm not sure whether to be worried about the cystoscopy or not.
(My natural tendency is to catastrophize!)

@dogatetheremote no my urine tests come back clear
@SparklingLime The GP gave Ovestin cream.

OK, so use plenty, including at the entrance to your urethra, every night, as advised in the attached screenshot (from link above).

You might also find this thread a bit helpful.: https://www.mumsnet.com/talk/menopause/4517960-vagifem-or-ovestin

The poster Jinglinghellsbells on that thread is very knowledgeable if you want to tag her, but I think persisting with the local oestrogen is vital. Not easy when you are in so much pain, I appreciate.

@SparklingLime
Thanks for being so helpful and kind.

I use Ovestin. After using it daily for the first two weeks I now only use it twice a week. If I use it more often than that it's really painful. So I have to use it to prevent the symptoms, but not too much or it causes symptoms! I have found the right balance for me, but it took a bit of experimentation. I use it internally as well as externally.

@Crumpetsandpancakes I was told to use daily for 3-4 weeks then reduce to few times a week.
I’m glad you have found the right balance for you.

I was also told 3 to 4 weeks, but realised fairly quickly that it was causing the pain. Even now it can sting a bit the day after I apply it, but I can cope with that. It's only slight. It might be worth experimenting a bit if you feel things are going the wrong way.

@Crumpetsandpancakes it’s worth me testing that theory. Hopefully it’s not making it worse.

So the pains still there. Taking 2 Amitryptiline a night. Using the Ovestin cream and vaginal moisturiser. Dr has referred me to Urology.
I went away for a week ( during this time no pain) and during my time away I took Provera because they had stopped me continuing on the Combined Pill and I was worried about my period returning following a lifetime on the pill to manage periods due to Endometrosis Since stopping the Provera the pain has returned. 😭😭😭
Could the Provera have helped ? Or am looking at a more troublesome issue like Pundeal nerve entrapment ?
The pain is still a burning punching pain in my urethra. It doesn’t hurt to urinate.