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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 …

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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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Cystoscopy

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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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Re: Cystoscopy

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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Re: Cystoscopy

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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Re: Cystoscopy

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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Re: Cystoscopy

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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Re: Cystoscopy

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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Re: Cystoscopy

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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Re: Cystoscopy

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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Re: Cystoscopy

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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Re: Cystoscopy

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