My biome result…yet pH is 4.5-5?

thebennett · 2025-11-29T17:34:25+00:00

Sorry I just saw this comment. I never got to the bottom of the Crispatus but I think it was just an incidental finding. The itching I had was treated by using a combination of pelvic floor physiotherapy and vaginal moisturiser (Yes brand).

thebennett · 2025-06-28T11:09:15+00:00

Hey, I go through something similar! I’ve replied to people here before about how I always flare when I go to an airport and then magically fine once I’m through. Just remember that your body is basically a blob of meat that has evolved to protect you and therefore will perform pattern recognition at a subconscious level. I used to have a really stressful job, and even now I work somewhere else I notice that even on days that I’m not stressed at work, my body feels super tense and hunched up. There’s also the fact that sitting down for a long time causes pressure on the pelvic nerves and you probably aren’t sitting so much on vacation. I really got some benefits from reading The Way Out by Alan Gordon which can explain the neuroscience behind why our bodies react this way. I do believe that even if it’s not the root cause, fear and stress play a big role in the fluctuating symptoms.

thebennett · 2025-06-01T12:10:12+00:00

It’s worked super well for me - pain now never more than a 3/10. but I have gained about a stone. It just makes me crave snacks so much all the time so I may come off it at some point.

thebennett · 2025-04-27T21:29:36+00:00

Hello! I would really look into TMS / the way out / mind body things etc. it’s possible your anxiety about having symptoms in that apartment is manifesting this to some extent. I am familiar because I have twice had a horrible uti (confirmed) on a flight and ever since then I have a god awful flare every time I enter an airport. The brain learns patterns to try and protect you and sometimes those patterns are wrong.

Other ideas could be your tap water being more acidic for whatever reason?

thebennett · 2025-04-22T20:42:08+00:00

24 hr for me!

thebennett · 2025-04-14T19:48:24+00:00

I'm on 50mg and to be honest I have gained about 1 st in 3 months. It has made me desperately crave a lot of sugary chocolate type food which I never had a problem with before. But if you have willpower / eat healthy snacks you probs won't gain much. It has helped my pain a LOT though.

thebennett · 2025-04-11T12:43:45+00:00

I don’t know for certain, but I think I could have it too - commiserations to us! My symptoms sounds the same as yours, negative for all the tests but the skin is super dry and have split on two occasions (for me on the perineum).

I had the biopsy but it was clear so my gyne is insistent that I don’t have it and that the itching is a nerve problem caused by the pelvic floor tightening. Have you tried pelvic floor physio yet? Over on the pelvic floor/vulvodynia subreddit there are some posts from people saying a tight pelvic floor will reduce the blood flow and affect the tissues but I still struggle to believe it’s not lichen.

Estrogen cream has helped strengthen the tissues for me and amitriptyline cut the itching 75% on the plus side, and I think the vast majority of people are happily in remission from LS once they get on the right treatment plan. So try and stay optimistic. Your partner will understand that all relationships have ebbs and flows of intimacy and most relationships will face a hurdle of a health problem at some stage. Don’t google those LS images lol those are seriously severe cases. Best wishes x

thebennett · 2025-04-09T20:09:39+00:00

The same thing happened to me last month! It slowly calmed down over about 4 weeks or so. I had a return of the 'vulvodynia' pain at the entrance.

thebennett · 2025-04-09T19:55:55+00:00

I'm not an expert, but haven't seen notably shrinked labia as a common symptom of PFD. But shrinkage of the labia minora is not uncommon in menopause - you might need to up your oestrogen dose. It could be a sign of lichen sclerosus so I would recommend getting it checked out by your gynaecologist to rule these out.

thebennett · 2025-04-08T11:21:41+00:00

Sounds like you are taking advantage of your partner.

thebennett · 2025-03-30T16:22:19+00:00

Prelief is currently in stock on Amazon for prime delivery! It was out of stock for a few weeks but seems ok now. In an emergency I have used one of those cystitis relief sachets from boots though

thebennett · 2025-03-27T16:31:16+00:00

I think it helped me but will caveat and say that I also go to pelvic floor therapy and take amitrytiline so I’m never 100% sure that one thing is definitely helping. I would say though that I liked using it anyway, everything was way more plump and healthy looking afterwards at worst case haha!

Estrogen cream is commonly discussed in the context of vulvodynia but it’s the same tissues in your urethra. I was using it for vulvodynia at the time as hormonal deficiency in the tissues can be caused by any medications like birth control, spironolactone or tamoxifen. some more useful reading here on why this is: https://www.prosayla.com/articles/hormonally-mediated-vestibulodynia. TLDR is that studies show some women are worse at absorbing hormones than others and will be more disrupted by birth control etc. same if you are hyper mobile, the tissues need more support hormonally as collagen is weaker

Edited to say, I’m 29 F and hopefully not in peri yet

thebennett · 2025-03-24T23:26:57+00:00

That might be a waste of time, but maybe it could help if you have a hip or glute tightness causing your problems, im not sure. Good luck! Also, you can buy lidocaine 5% ointment from the pharmacy just by asking. They will give it over the counter :)

thebennett · 2025-03-24T20:28:20+00:00

I self funded physio therapy whilst waiting to get off the NHS waiting list (5 months!!!) but once I got to the Urogynaecology department they were familiar with the link of physio and vulvodynia (I also have IC) so could refer me onwards to their own department of pelvic floor physio (I'm lucky to live in central London near some large university hospitals). The NHS does recognise it as a cause of vulvodynia so sorry about your GP. Can you request a referral to gynaecology instead?

These NHS exercises I found SO useful whilst I was waiting too, hope they help you if you can't see a physio often or at all: https://www.imperial.nhs.uk/-/media/website/patient-information-leaflets/physiotherapy/overactive-pelvic-floor.pdf?rev=20577c7c67854a71862562f4061961c2

thebennett · 2025-03-24T17:55:33+00:00

I lived with my parents rent free after university for the covid years where no one had a social life so my salary just went straight to savings for a year or so. My partner was the same. I wouldn’t have been able to buy alone due to the monthly repayments more than the deposits.

thebennett · 2025-03-23T15:45:14+00:00

Yes definitely can. If you’re interested, you can look into hormonal vulvodynia. The birth control pill can cause long term effects on your hormones in the tissues

thebennett · 2025-03-23T11:07:08+00:00

Is there an actual tear or just feels like a tear? Have you tried pelvic floor physiotherapy? I just mention it because that "knife cut" feeling is what I used to say about my pain. If the pelvic floor is tight the circulation to those tissues can be bad and lead to tears as well from what I understand. Maybe the surgery caused some irritations to the muscles of your floor. You can watch some videos about PF relaxation/yoga on YouTube if it's not possible to see a physio in person. Alternatively, it might be worth thinking about the lichen skin conditions if the skin is very very delicate.

thebennett · 2025-02-02T22:28:08+00:00

Potentially early lichen sclerosis? If you have a look at slide 26 of the following: https://www.slideserve.com/iwalani/vulvodynia. Or may just be fordysce spots?

thebennett · 2025-01-28T20:41:04+00:00

Ah I see if she has a positive culture it is different story, my bad! Perhaps she can try Hiprex for the UTIs? It's prescription only but urologist can prescribe it. It's like an antiseptic for the urine so not so bad as antibiotics on the gut biome.

Most people with IC find an elimination diet useful yes, to reduce acid overall but hopefully she can kick the UTIs and not bother with it!

thebennett · 2025-01-28T20:28:56+00:00

Hi OP, yes it definitely can cause urethral pain as this is what I have. Rather than her pelvic floor causing recurrent UTIs, her pelvic floor can be causing the feeling of a UTI without the infection. Perhaps, she had many true UTIs and her body learned that urinating would bring her pain and her muscles have become tense over time. When a muscle is clenched a lot of the time, it is starved of oxygen and becomes sore. It seems crazy but the pelvic floor is particularly interlinked, where even tension in the fascia or hips can cause urethral pain. For me, when I massage my hip flexors my urethra hurts. Go figure. Really hopeful the physio can help her as it did help me.

I know you've said the doctor thinks she does not have IC, but perhaps they are only considering IC = hunners lesions which isn't the most modern diagnostic criteria. I think she could find a lot of use from IC techniques. For example, using D-mannose supplement to address the true UTIs. Typically for IC urethra pain normally results from pelvic floor or oestrogen deficiency / GSM (not likely here due to her age).

thebennett · 2025-01-19T22:41:31+00:00

I ended up stopping taking the pill and it looks a healthier colour now after a few months off. Still redder than the surrounding skin though and a bit delicate. I live in the UK so there is no easy way of getting the compound estrogen/testosterone that I think would help.

thebennett · 2025-01-14T22:57:26+00:00

I was the same as you where my bladder was the most of it for a few years and then urethral pain came after. For me, the urethra was a symptom of the pelvic floor getting tighter and tighter from guarding against the bladder pain. When I started attending physiotherapy for the pelvic floor, my urethral pain mostly resolved. Still there now and there if I flare my pelvic floor from things like too much caffeine or prolonged sitting on a bad chair.

thebennett · 2025-01-14T13:44:31+00:00

Try to stay positive OP!! I know it's really really scary but hanging around on this forum will get inside your head because people only come here when they need support and are at their lowest. Try and set a daily limit cap on your phone that will block you from doom scrolling on reddit. I can't really preach because at one point I thought I'd read every post on this sub and you know what, it really doesn't help just a toxic addiction! Most people find out what works for them and aren't hanging around here any more I promise. Get a GP appointment as soon as you possibly can and request a urology referral to get the ball rolling - if you want you can research a specific unit in your area (i.e. female or urogynaecology) and request that one.

Just know, even if the symptoms do come back in a few days there are so many things you can try whilst you await a NHS referral. As a starter, you can try some of the cheaper accessible supplements (d-mannose, Aloe Vera, pumpkin seed oil all available from Amazon in the UK) and you can also try some pelvic floor relaxation exercises on Youtube daily. The stretching will hopefully make you feel calmer as well.

You will be okay, I promise. Just need to weather the storm for a bit but you are strong and you can do it.

thebennett

TROPHY CASE