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» 7 months since the diagnosis
Cystoscopy EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Cystoscopy EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Cystoscopy EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Cystoscopy EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Cystoscopy EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Cystoscopy EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Cystoscopy EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Cystoscopy EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Cystoscopy EmptyMon Apr 08, 2019 7:54 am by Jo44

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Cystoscopy

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Cystoscopy Empty Cystoscopy

Post  maria1985 on Wed Jan 02, 2013 5:35 pm

Hi Everyone and Happy New Year,

I am posting today that I am going to have a cystoscopy performed in the following weeks and I'm a bit worried about the possible side effects that this procedure may cause.

I have been reading on internet about women who had it done and made things worse afterwards, so I dont know what to believe and honestly I'm a bit frightened. Had any of you done a cystoscopy or have any knowledge of any side effects? I have been suffered of pain in my urethra and vagina for almost 2 years now (even though im quite comfortable when taking my no-spa tablets) so I would really like to get an answer as what would be the cause of it, but I'm also scared.

Goodluck to everybody living with this condition as its a real nightmare.

Maria xxx


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Post  Sunflower82 on Wed Jan 02, 2013 10:28 pm

Hi Maria,
I had two done over ten years ago when all my problems started. I had frequent attacks of cystitis and had a horrible burning sensation everytime I went to the loo. I was put to sleep for the procedure, it was very uncomfortable after going to be honest with you it was like weeing with glass in it, but the only advice I can give is drink and drink (water) the more you drink the better it will be after about a litre and a half it doesn't feel as bad. There give you (or they did ) anti boitics to take before the procedure which at the time I took. They suggested after two attempts that I had intersitial cystitis but I think it was the start of the vulvodynia. It's worth having the procedure to check to see what is going on inside your bladder. Have u been diagnosed with vulvodynia ?

I don't think the procedure had any lasting effects, by the next day I felt ok, just have to keeping drinking. Let me know if u want to know anything else

Good luck.

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Post  Alana3 on Thu Jan 03, 2013 2:42 pm

I never had one, but they wanted to do the IC challenge test (or whatever) after reading the information on it, I said absolutely not. But this is way different than that as I think you're knocked out for it and you aren't told to rank your pain (How screwed up is that?! One of my other doctors said the IC challenge was barbaric!). My understanding is yes, it can make your symptoms worse, but that can happen with anything they do to you. They give you a rescue solution, which numbs your bladder after your procedure. I think that sometimes it's no pain, no gain. I just did the vv surgery, and the pain I was in after was unbelievable (intense burning from the stitches it hurt REALLY bad), but it's getting better everyday. At least after this you get a diagnosis and you can be treated approrpiately. Oh, and yes, it hurts to pee after. After my surgery it felt awful to pee, but that goes away the next day or so (they used a catheter on me). Just keep peeing and it will feel better. I like the advice above, drink water, as it will flush out much quicker.

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Post  maria1985 on Thu Jan 03, 2013 3:35 pm

Thank you both for replying.
I have not been diagnosed with vulvodynia but my GP suspects it so she refered me to Leeds Hospital to see a gyno uro. After telling the consultant all my symptoms she decided the way to go is to have a cystoscopy done.

For me it started about 2 years ago when I had a bad episode of UTI but because I have been given the wrong antibiotics several times I ended having spasms, shots and waves of pain down below even after the infection has cleared. Whats made it worse is that everytime I went back to doctors all they could say is drink more water, not even bothered to investigate or refere me to a specialist.

What saved me are these tablets I bought after seing an advert at TV. They are called No-Spa and contain drotaverine hydrochloride and its a muscle relaxant for the smooth muscles and urinary tract. They take any discomfort away and for 6-8 hours I'm like new. The good thing is that 2 years later the pain diminished alo and its quite bareable even without tabs. I don't have to spend nights in the hot tub anymore as that was the only thing that brought a bit of comfort.

I'm a bit scared of the cystoscopy but I also want to find out what is causing me this discomfort. I just want things to be back to normal and enjoy my newly married life.

I will keep you updated

Lots of love,
Maria xxxx


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Post  Alana3 on Thu Jan 03, 2013 4:19 pm

Wait you're doing that for a diagnosis of vulvodynia and not IC? I'm confused.

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Post  maria1985 on Thu Jan 03, 2013 4:41 pm

Perhaps they want to rule out that the pain I'm getting isnt coming from my bladder or urethra.

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Post  Alana3 on Thu Jan 03, 2013 4:50 pm

Hmm no idea, one of the docs I saw wanted to run that on me, but like I said, I said no. The one who I had my surgery with was able to show me exactly where my pain was coming from because the area was all red and inflammed looking when provoked. I mean it's def possible you have IC or something similar. Have you actually got a vv diagnosis? Or are they still ruling stuff out?

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Post  Sarah001 on Thu Jan 03, 2013 6:02 pm

I can't comment on the procdure but if it started with a UTI and spasms and a muscle relaxant tablet takes the pain away I'd say it's muscular and a physio specialising in women's health would be a better (and safer) option first. The doctor can refer you to one if you want to put the test on hold while you get your pelvic floor/pelvis checked out.
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Post  Alana3 on Thu Jan 03, 2013 6:36 pm

I had this too, it went away for me eventually, but I still have vv (well maybe not because they just cut the skin off lol). I went to PT, but the skin was so unbearable I had to stop going. It couldn't hurt to go to one, but I'd rather nip it in the butt, if it's IC, I'd rather catch it before it got worse, that way you can keep it under control and you may never get full blown IC. But PT can help as well, I really liked my therapist she helped me big time with little tricks and such. I took uribel for a while and finally took myself off when my doctor realized it wasn't really helping. I had crazy UTI's going on for a few months (which developed into worse things yuck). But maybe you're like me, and your bladder was kinda pissed from having so many infections going on. Mine has gone away and I hope it remains gone lol. But physical therapy helped for a little while, but remember smooth muscle is different from a vaginal muscle... I don't think they're the same muscle relaxants, but you could check into it. Maybe if a muscle was tightening around your bladder, but it would make no sense that you were responding to a smooth muscle medication because it wouldn't respond to a regular muscle relaxant, as far as I'm aware.

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Post  maria1985 on Thu Jan 03, 2013 8:38 pm

You are right Alana.
The medication I'm taking couldnt have had any effect on my vaginal muscle or any other skeletical muscle as its not destined for it.
This is what it says about No-spa:
No-Spa tablets are an antispasmodic drug.
This medicine is used to treat the symptoms of smooth muscle spasm:
- Associated biliary diseases - gallstones, colangiolitiaza, cholecystitis, pericolecistita, cholangitis, papillitis
- Associated urinary tract disease - kidney stones, ureteric stones, pyelitis, cystitis and bladder sphincter spasm
It is used as adjuvant therapy in:
- Smooth muscle spasm associated with gastrointestinal diseases: gastric or duodenal ulcer, gastritis, cardia and pylorus sphincter spasm, enteritis, colitis, spastic colitis accompanied by constipation and irritable bowel forms accompanied by flatulence
- Headaches associated with intracranial pressure sensation
- Dysmenorrhea (painful menstruation) associated with gynecological disorders.

So maybe the cystoscopy it is the right thing to do. I just hope it wont result in more pain afterwards. I read on internet it can agravate your symptoms.

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Post  Alana3 on Thu Jan 03, 2013 8:54 pm

Honestly, my doctor told me to STAY OFF THE INTERNET. I didn't listen. I had a vestibulectomy a month ago. If I had stayed off my recovery would have been a lot less painless and less stressful. Everyone is different, yeah it could possibly result in worse pain and aggravation, but at the same time it could help you become more comfortable and take a step in the right direction. I don't think your doctor would have recommended it you if he/she didn't think it was necessary. Always remember the physicians have gone to medical school for this and they usually try minimal invasive until they can't any longer. I know it sucks trust me, but sometimes you just gotta go with it and hope for the best. The internet is a scary place for information and remember most people who are reporting back are complaining because the treatment or whatever didn't work for them. What happened to the millions of people who have had it done and didn't have any side effects? They are living normal lives and have nothing to report because hey they may be fine now. Trust me I am an internet groupie, I love it, I could sit there and diagnose myself with anything under the sun, but guess what? 9 times out of 10 what happens in the worst case scenario more than likely will not happen to you. Smile take it easy

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