Vulvodynia: Hi I have suspected... - Pelvic Pain Suppo...

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Vulvodynia

Rehab45
Rehab45
35 Replies

Hi

I have suspected vulvodynia but my pain may also be coming from my bladder and or urethra. I have a burning sensation everytime before I urinate, constant pelvic pain and a sore feeling in the urethra/ vestibule area. This has been for one year now.

I am due to have a cystoscopy to rule out my bladder but am scared it may make my pain worse.

Do any of you ladies with vulvodynia have pain every time you urinate and bladder pain when it's full? Also have any of you had a cystoscopy and did it make your pain worse?

Thanks

35 Replies
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Peanut67

Yes to all those things until I was prescribed nortriptyline also use Ovestin 1mg.. depends how old you are. I also use YES oil based lubrication which is soothing... you have to buy this only water based is on prescription which I found very irritating to my urethra. RE cystoscopy ask for sedation it is too painful for someone with your symptoms otherwise. You may have to be assertive about this. I was eventually diagnosed with Vulvodynia and eventually sent to UCLH hospital for chronic ab domino pelvic pain. That was 24 years ago. Good luck

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Rehab45
Rehab45
in reply to Peanut67

Did you have the cystoscopy?

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Rehab45
Rehab45
in reply to Rehab45

I have an appointment for UCLH too

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Rehab45
Rehab45
in reply to Rehab45

I am 38 and currently take gabepentin and amitriptyline

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Konagirl60
Konagirl60
in reply to Rehab45

Have you gained weight from using these meds?

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Peanut67
Peanut67
in reply to Rehab45

Yes had a cystoscopy... everything normal. Then referred to gynecologist who was no use had never heard of vulvodynia. Went to GUM clinic at Watford who have a special clinic for vulval problems including physio. Then escalated Dermatologist no good .. Pain clinic Lister Stevenage who re referred me to UCLH them being specialists in pelvic pain.

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JH19
JH19
in reply to Peanut67

How can a she have never heard of it! Ridiculous. You can do your own research on specialists and then ask your gp to refer you there. Also 1)try going on an interstitial cystitis diet and see if that helps the burning. Lots of stuff like tea and tomatoes irritates the bladder. 2)buy a test stick from amazon that tests your vaginal PH. Not the one for bv. The one that shows you your exact ph. may not be normal. If it’s not it could explain your pain

1 like
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JH19
JH19
in reply to JH19

Did you try topical lidocaine?

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JH19
JH19
in reply to JH19

yes not good for me

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glenbanchor
glenbanchor
in reply to JH19

Yes that works for me "Germaloide cream has it in it pain killer. I'm not so sore anymore as I've been on a Keto diet and lost a stone in weight. Also sipping water all day from a bottle definitely help expand the bladder and reduce the number of times I have to go especially in the night. Its important to keep your bowels working and not get constipated which definitely makes it worse. Also keep your system alkaline by taking waterfall D-Mannose pills.

I have my first appointment end of month with gyno. but wondering whether to go or not.

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glenbanchor
glenbanchor
in reply to JH19

Yes its a good idea to keep PH alkaline and not too acid also reduce coffee and sip bottle of tap water often as advised by clinic to expand bladder so no need to go to toilet so often. Would think the opposite would be true but no. Loose weight has helped Keto diet works. I'm better than I was but at the end of the day depending on how far I've walked can be nippy. Good topical cream works like lidocaine or sylk lubricant soothes.

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glenbanchor
glenbanchor
in reply to JH19

Yes me too Cut out coffee and any acid foods. Keto diet helps lost lots of weight and that definitely helps. Don't get constipated that helps.

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claud89

Hi, I don't have vulvodynia, but I've had cervicitis and vestibulodynia for 6 months now (very similar, slightly different area). I have the other symptoms you complain about too, and my gynaecologist, who is an expert in Chronic Pelvic Pain, says that they are caused by: a very strong hypertonus of the levator ani muscle, endometriosis, adenomyosis (this one found with uterus ultrasounds), cervicitis. The palpation pain gets better with diaphragm breathing, and I was recommended biofeedback therapy, which I will try for the first time in October. i've been taking a cocktail of integrators since June, but to be honest I'm not seeing results. I think, from personal experience, that some sports, like cycling and yoga, make it worse. my advice is, find a gynaecologist who is a specialist in chronic pelvic pain, and no matter the cost, go to them.. all best wishes to all of us

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Cheryltowers

I have been diagnosed with Pelvic Floor Dysfunction or more specifically Levator Ani Muscle syndrome. Two years now of not being able to sit, stand or walk for any length. Lots of time in bed, on the couch or in the recliner. I haven’t worked in two years, initially from complications from a bowel resection and now this.

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claud89

It takes a lot of mental strength to accept all of this, because our lives were "normal" and suddenly everything changed

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saraholiversarah

I so agree with you!!!!

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saraholiversarah

Oh my goodness. I have Pelvic Floor Dysfunction high tone & Levator Ani Syndrome, Dysuria, Vulvodinia, IBS, hesitancy to Microtin among others unlike you, I cannot sit or lay down for long periods of times. I used be boxer, run 8 miles, OMG, I used to be fit. IDK how all of the sudden according to these Dr's because of "trauma" I got all these frigging issues!!! No! No!

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Lurcher-lady

With this sort of problem I find diet helps. Potatoes in any form, tomatoes and sugar definitely make symptoms worse.

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claud89

No caffeine in any form, no alcohol, these are the basics. As lady says, sugar is a no (added sugar especially, but the diet I "should" be following eliminates also simple sugars (e.g., carrots, grapes....) bluargh

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saraholiversarah

The Elimination Diet is a great start! Check it out!

1 like
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glenbanchor

Agree. Try D-Mannose pills to make less acid. Cut down coffee for sure and sip water from little bottle through the day helps.

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bc18

Sounds like interstitial cystitis to me. See a women’s health physio who specialises . I know of a great private one in South Wales if that’s of help.

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Lurcher-lady
Lurcher-lady
in reply to bc18

I’m pretty sure that is my problem bc18. Doctors in this area are not interested.......I’m guessing none of them have it 😉

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Skye22

Recovering from recent therapy ,had cystoscopy procedure to investigate bladder due to incontinence, urgency and pain deep in bladder. The cystoscopy itself was not painful but I received bladder neck injections which was beyond painful!! So far my incontinence is about 50% better but if I need more bladder injections I will defo get general anaesthesia. This procedure was carried out using local anaesthesia as I was also having botox injections into pubirectalis muscles as diagnosed with levator-ani syndrome. You have to be awake for the botox as they identify trigger points in vaginal area in which the injections are given. This was my second round of botox (needs to be 6mths apart) and while it doesn't take away the pain there is a moderate difference however intensity returned after about 3mths. I have multiple health problems but I am supported with a great health care team and I would definately recommend pelvic physio, again doesn't eradicate pain but makes it more tolerable and allows me to sit on my bottom like A normal person even if it is only for a few days!!! From a lot of the posts I have read a lot of our conditions are very similar and most people have to wade through various meds/treatments and various professionals to get a diagnosis and a care plan put in place. For me it is all about condition management and grasping those good days in between flare ups!!! Good luck with your treatments.

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Konagirl60

If you’ve been diagnosed with vulvodynia, there are many signs and tests that should’ve been performed before the diagnosis was given.

Did any doctor see redness, rash, a sore or odd vaginal excretions that aren’t clear but are darker yellow? Is your vagina itchy?

Your vagina should be swabbed from the inside and from the cervix and sent for culture to a Microbiology Lab. They need to rule out yeast, E.coli, and other pathogens. The doctors need to rule out infection. Your urine should be checked for nitrates, white cells, microbes, red cells and it should be cultured as well.

You likely need a CT-scan and an X-ray.

How many pelvic surgeries have you had? Did the surgeon use any metal of any kind during the surgery. Metal parts can migrate and cause great pain and damage to our internal organs, nerves, and connective tissues.

Does Lidocaine cream help? Keep us up to date. Try to remain calm before the procedure. I do agree though, listen to your gut.

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Rehab45

No everything looks normal. Sometimes slightly red. Have been to a skin doctor who said all is fine.

I've had all of the swabs done plus an mri, ct and ultrasound.

I have had no pelvic surgery. Have seen urologist and gynaecologists. The only thing left is the cystoscopy then maybe a nerve specialist depending on the result. Lidocaine doesn't work for me just burns, I think I'm allergic...

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glenbanchor
glenbanchor
in reply to Rehab45

Lidocaine burns initially but soon relieves pain.

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claud89
claud89
in reply to glenbanchor

I was given lidocaine by my UK doctor, but my Italian doctor says that they really don't like it because it can lead to sensitisation of the area, if used for long periods, and make it even worse in the long run. I have the itchy sensation only when I apply it too close to the entrance of my vagina, maybe steer clear from it

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Kalamunda

I too have been in constant pain with suspected vulvodina, constant soreness with severe burning when I pee. Bladder pain for which I take pregablin. I use ovestin 1 mg. I'm waiting for a consultation with urologist but although I was referred in May I still havn't had a date for that. I need to pee about every hour night and day. My world seems to revolve around the bathroom! I'm interested to read about an oil based lubricant as I suspect the water based one I use is ineffective and sometimes an irritant. I've been like this for 13 months now.

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glenbanchor

A product called sylk lubricant is very nice.

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glenbanchor

I'm supposed to use estrogen topical cream advised by doctor and gyne. Works but not too keen on it.

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glenbanchor

Was advised to drink plenty water from a bottle of water throughout the day doesn't make you pee more but expands your bladder so it can hold more fluid. Really helps only up twice a night now. Was up every two before. This was advised by pelvic floor expert at the hospital. She has told me to do lots of pelvic floor exercises too. Had a gyn exam but no prolapse after all only a skin tag. Great relief. Also need to keep bowels empty so no pressure so that definitely helps. Awaiting urinologist appointment too.

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Strona6

Hi ladies,

I have just joined the forum. I received a recent diagnosis of vulvodynia. It's been increasing in severity over the past 6 months. I echo all your symptoms. Did anyone use nortryptyline for it? Was it effective?

I commenced amitryptyline 10mg a couple of months back & it had helped me sleep with the deep vaginal pain that was wakening me up. However the consultant changed it to nortryptyline last week as she said it will help unprovoked episodes.

I have only taken 2 nortryptyline tablets so far. I had an episode of the room spinning last week & was hypertensive so i didn't want to change my medication during that. I also got diagnosed with vertigo.

I feel ear pressure constantly and dizzy. Sitting trying to think if i would be better back on amitryptyline or just stopping it as I'm only on 10mg.

It has been helping me sleep, but my eyes feel constantly blurry. Any information from anyone who has used either, i would really appreciate.

I didn't want to take any meds, but i felt life was a real struggle. I have 2 kids & was in pain constantly & worse when i pass urine.

I have had 2 emergency cesarean sections. My second birth, i hemorrhaged & my uterus wouldn't contract. My partner watched as the surgeons were holding my bowel down. The consultant appeared & i was put to sleep.

The consultant i seen recently for the vulvodynia diagnosis has put it down to the trauma of childbirth.

Whilst i agree it was hugely traumatic. It was 6 years ago. I think there is never damage somewhere. I also have fibromyalgia, which was diagnosed 4 years ago. Both of my children breastfed and i did it over a 3 and a half year period. I never got more than 2 hours sleep at a time during that period. Chronic sleeploss apparently gave me fibromyalgia. Although my mother has it & 2 sisters.

Sorry to go on so long. Just trying to give you a bit of background. Look forward to hearing from someone. Much love ladies xxx

I

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glenbanchor

Yes I have these symptoms don't have prolapse as once diagnosed by a doctor but have found drinking lots of water to expand bladder as advised helps. Went to gynaecologist who told me no prolapse pelvic floor pretty strong do exercises often. Use estrogen cream as advised does help. Going to urinologist soon. Urethra burns too especially before I pee.

Drinking plenty water definitely helps use also D-Mannose pills to neutralise urine. Urine should be clear if not too acid. Hope this helps.

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