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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 …

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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

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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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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Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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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Referred to a women's health physio now...

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Referred to a women's health physio now...

Post  WaahwaahUK on Tue May 03, 2016 2:57 pm

Once again, I feel like I'm poking around in the dark and telling my GP what to do... I've had a period of about six weeks where some exercises from my osteopath really set my back pain off which in turn flared my gynae pain and have been slowly trying to come out of that. I had got to a fairly manageable pain daily of 2/10 for me which meant still pain constantly but very manageable and wasn't stopping me from going out walking etc. this recent flare was pretty debilitating though. So I asked my GP to refer me to a women's health physio as little did I know, it's available on the nhs in my area! I have an appointment in a couple of weeks. In the meantime I've started tentatively doing the exercises in Amy Stein's book (the letting go ones). I am soooooo tight in all the areas it focuses on! So I'm taking it very gently... My osteopath has been great, but I think is still somewhat perplexed by my ongoing vulval and labia pain. He did say it may be residual and will improve over time. I wonder if the women's physio specifically may hone in on muscles that are impacting on that area.

I know some of you have had great success with physio. Would really love to hear some encouraging words? Two steps forward, two steps back? I can cope with that. If it ultimately helps....


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Re: Referred to a women's health physio now...

Post  PainBlogger on Tue May 03, 2016 4:25 pm

I'm still making good progress with physio. When I look back at my pain diary, there are only 13 days out of the last 70 days where my pain has gone above 1/10 and the worst pain I've had was 3/10 and that was only on two of those thirteen worse days. With dilator exercises my pelvic floor muscles are lengthening/less tight. I've slowly but steadily progressed to being able to use the fourth largest dilator in the set of five - not easily, but without it provoking my pain. Weirdly though, despite my PFMs improving, my bladder still isn't emptying properly in one go - which is mostly an annoyance though it is also the cause of most of those 2/10 and 3/10 days. When I get pain down there now it seems to be definitely urethral and linked to my bladder emptying in spasms. My vulval pain is now very low level even with contact. I've even been able to wear jeans again these last couple of weeks although still having issues with hard chairs.

It's been a two steps forward one back process, but I feel like I can see light at the end of the tunnel as far as this condition not restricting me from doing things. It's having far less impact on my mood these days because I'm able to forget about it a lot of the time. So there is hope. Believe me I've felt terribly despondent at times over the past couple of years. But with a lot of hard work, patience, and possibly a bit of luck, I've gone from 6/10 burning pain for most of my waking hours to how I am now. Good luck with your appointment. It might be an idea to write down a few notes and any questions before you go.

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Re: Referred to a women's health physio now...

Post  WaahwaahUK on Tue May 03, 2016 5:12 pm

Thank you. Your reply brought a tear to my eye! A good one though. I feel like my body is so bent out of shape from holding myself so tensely all the time (over a year now). I know that undoing that is going to be hard. But positive stories are so helpful. They really are. I've not done well on the meds I've tried and so pain relief is limited for me meds wise. It's very frustrating. But I know even now I find if I don't make an effort to drop my pelvic floor it's almost constantly trying to tighten so there's definitely work to be done there. I'm interested to see what the physio says. I really want some guidance. Osteopath has been really really good too but feel I need more specific help with the pelvic related stuff. I sometimes think back to before this all started, and wonder how on earth it got so bad so quick?! But then, I think I've always had a sensitivity in that area and been tense, so I think perhaps the infection I had that wasn't treated initially just upset it all and then I went months without even considering it was muscle / nerve related etc. Anyway, on a reasonable day I can actually wear jeans which I couldn't last year. So that's an improvement I know. And walking isn't excruciating to the point of feeling like I will pass out, but more catching and achy and sore. Got to keep going! Thanks for your encouraging words. Much appreciated. Please keep us posted here.

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Re: Referred to a women's health physio now...

Post  WaahwaahUK on Thu May 12, 2016 6:13 pm

Had my first womens health physio appointment today. Finally, someone didn't bat an eyelid when I described my symptoms! The plan is to continue with the Amy Stein exercises but slowly increase them, and she's given me some internal massage instructions. Next appointment she will be doing something internal to look for trigger points (she couldn't do it today as I had got my period slightly early). She was very encouraging. Felt listened to and understood. Here's hoping this is the start of some more recovery for me!

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Re: Referred to a women's health physio now...

Post  emalita on Thu May 12, 2016 7:26 pm

That is wonderful that you felt heard and she was acknowledging of your pain! Sometimes that is the most valuable piece of relief we can receive.

I hope this treatment works for you!

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Re: Referred to a women's health physio now...

Post  WaahwaahUK on Thu May 12, 2016 7:37 pm

Thank you! For the past year I've felt like I've been looked at as an anomaly or a nuisance by gynaecologists. Really hoping the physio helps. The exercises I've been doing off my my own back from reading have definitely highlighted areas for me. You're right, being acknowledged is so valuable. I feel hopeful.

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Re: Referred to a women's health physio now...

Post  PainBlogger on Thu May 12, 2016 10:16 pm

That's great to hear. How long do you have to wait until your next appointment?

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Re: Referred to a women's health physio now...

Post  WaahwaahUK on Fri May 13, 2016 7:16 am

Three weeks time. So in that time I need to up my exercises the amy stein ones and start gentle internal massage every other day. Really hoping this is a turning point! She also recommended a higher strength lidocaine. I'd tried using vagisil which helped a bit but she said my GP can prescribe a higher strength so I have a telephone consultation next Wednesday to ask for that.

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Re: Referred to a women's health physio now...

Post  PainBlogger on Fri May 13, 2016 8:05 am

The good thing about the 5% lidocaine ointment you can get prescribed is that it has very few excipients i.e. no perfume. So, in theory, it's less likely to irritate the skin. Keep us informed with how you're getting on. I'm going to see my physio next week. Progress has slowed a little - definitely not going backwards at all, but whatever she did last time was so effective that I'm hoping I can get another boost forwards.

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Re: Referred to a women's health physio now...

Post  WaahwaahUK on Sun May 15, 2016 10:37 am

Good luck with your next physio and keep us updated! I've been finding the Amy stein stretches really helpful. Had terrible trouble doing them to start with but taking them very slowly. Will shortly start some of the internal gentle massage the physio gave me to do and see how that goes too.

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Re: Referred to a women's health physio now...

Post  WaahwaahUK on Thu Jun 02, 2016 6:39 pm

Little update - I've just had my second physio session. It turns out my pelvis is misaligned which has happened before (I get pain in my hip and when that comes on my vulvodynia pain gets worse too). She did some work on that. Also internally, I have a really tight mass of muscle on the OPPOSITE side to the side I get pain.... How weird?! I'm persevering with the Amy stein exercises along with a couple from physio. She suggested getting hubby to 'sweep' the muscle internally gently for me. I'd rather do it myself though.... Anyone know how / if you can do that?!

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Re: Referred to a women's health physio now...

Post  emalita on Thu Jun 02, 2016 8:37 pm

I'm not sure if this is what you're referring to, but I hope it helps Smile

Self-stretch intravaginally. This is a technique to stretch your intravaginal muscles that lie one inch from the vaginal opening.  Insert your clean left thumb intravaginally up to the level of the first thumb joint. Gently press or sweep your thumb along the right vaginal walls, providing a deep stretch. Do a few sweeps from the midline toward the bottom of the right vaginal wall. Hold areas that feel tight or uncomfortable until they feel softer.  Then insert the right thumb intravaginally and sweep or apply pressure points along the left side of the vaginal wall. Repeat a few times on each side. Do once a day.

http://womensvoicesforchange.org/tag/strengthening-pelvic-floor-muscles

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Re: Referred to a women's health physio now...

Post  WaahwaahUK on Thu Jun 02, 2016 8:48 pm

This is exactly it! Thank you! Makes sense from what she described.

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Re: Referred to a women's health physio now...

Post  PainBlogger on Thu Jun 02, 2016 10:15 pm

That is a bit weird that the tightest muscle is on the opposite side to the pain. But hopefully the sweeping exercises will help both sides. If you can reach OK then I'd say doing it yourself is better as you get sensory feedback that someone else cannot and you can gauge the pressure needed. Keep us updated with how it goes Smile

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Re: Referred to a women's health physio now...

Post  WaahwaahUK on Fri Jun 03, 2016 8:27 pm

Yes I thought it was weird but physio seemed unphased! I wonder if it's because my pelvis is tight on the left side (the side I get vulva pain) and looser on the right. Whereas the muscles internally are worse on the right. So possibly some referred pain from my hip / possible pudendal irritation (which osteopath thinks is nearly gone now and the pain is sort of residual). Don't know... I'm aching today but feel freer in my hip again so fingers crossed its just post-physio aches.

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Re: Referred to a women's health physio now...

Post  WaahwaahUK on Thu Jun 23, 2016 9:43 am

Little update - Just had third physio session. I have lots of gentle exercises to keep me busy for the next 8 weeks before I go again! I'm doing all the Amy Stein ones (the first ones in her book, not the core one yet as still in pain), I have a fit ball to use, the vaginal stretch and massage, and I've been advised to get dilators so that's next on my shopping list! As far as my vulva pain goes, I have noticed a gradual decrease in overall pain. I have had some days where it's flared and I've had some good days where it's been really good and distant rather than in the forefront for me. I have lidocaine but I haven't used it yet. As I've noticed an improvement I'm a bit reluctant. I do feel physio is helping. She suggested some gentle, pleasurable things to try with my partner but not sure I'm ready yet...She said to give myself at least a few more months of this physio and I may well see a huge improvement. She is very kind and encouraging. She did say, ultimately if my nerve pain doesn't subside, I could ask for laser on the nerves. She's hoping, and so am I, that this won't be necessary. She said nerve pain can take 18 months to settle. I've only really had gradual improvement in the last few so who knows? With the right treatment now perhaps they will calm even more...

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Re: Referred to a women's health physio now...

Post  PainBlogger on Thu Jun 23, 2016 12:10 pm

Glad to hear things are still moving in the right direction. The physio sounds very helpful. It makes such a difference when healthcare professionals are not only knowledgeable but can put forward their advice in an encouraging way.

There are various dilators out there on Amazon and various online pharmacies and healthcare supplies sites (as you've probably already seen). I got the Femmax ones first as they were at the lower end of the cost scale. They weren't all that great to grip though and after a few weeks it felt like the tip of the smallest one was getting a bit scuffed, for want of a better term. (There was the tiniest dot there of slightly thicker plastic presumably from the manufacturing process. I hadn't dropped it or scraped it against anything.) So going with safety first (and not wanting the hassle of contacting the manufacturer given the nature of the product) I invested in a new set but got the Amielle Comfort ones (more expensive but five in the set rather than four and with a detachable handle that I found easier to hold). It's worth going to the manufacturer's websites as they have videos and FAQs.

Also sensate focus is something I was advised to try and given some info sheets about, which is possibly what your physio was suggesting.

Laser was never mentioned to me by either the physio or any doctors. Was there a specific procedure name mentioned for that? Not that I hopefully would ever need it and it might only be suitable for a specific subset of patients but I'd be interested in reading up about it just to expand my knowledge.

Good luck as you proceed and keep updating Smile

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Re: Referred to a women's health physio now...

Post  emalita on Thu Jun 23, 2016 1:43 pm

WaahwaahUK - That's great to hear that you're making progress Very Happy I hope you continue to find relief through these exercises!

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Re: Referred to a women's health physio now...

Post  WaahwaahUK on Thu Jun 23, 2016 6:28 pm

Thank you ladies! PainBlogger in terms of what she said about laser she didn't really expand other than say that sometimes that is a last resort - lasering the nerves... I really hope that I don't go that route. I still find it hard to believe that the residual vulva pain I get will go, but it HAS decreased so maybe it will. I will look up sensate focus thanks! The second type of dilator you mentioned is the one she recommended. I may burst the purse and get them!

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Re: Referred to a women's health physio now...

Post  WaahwaahUK on Thu Aug 18, 2016 8:20 am

Just had my latest physio appointment. She's pleased with how I'm doing in terms of my pelvic muscles releasing a little more easily when she examined me. She said I have a little redness down there today - I'm thinking this may be due to me ovulating as I get a bit more sore in general and I have very sensitive skin everywhere. She has suggested I have a referral to a dermatologist that specialises in vulvodynia (though fairly sure we don't have one locally!) as she said long term they may be able to advise on things like laser treatment to kill off any over active nerves... I'm a bit terrified by this thought. She did say I may find I don't want or need that, but it's just an option to explore. Seeing her again in six weeks and continuing with dilators, exercises, etc. I've been looked at several times by gynaecologists who have seen nothing apparently skin wise, so I don't think I have a skin condition although I am prone to occasional soreness and redness just due to sensitive skin. I'm scared to see another specialist and possibly be fobbed off again as found gynaecologists just awful. As for the laser option, this really does scare me. Anyway, I know I've made progress but it is very very slow.


Last edited by WaahwaahUK on Thu Aug 18, 2016 8:22 am; edited 1 time in total (Reason for editing : Spelling)

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Re: Referred to a women's health physio now...

Post  PainBlogger on Thu Aug 18, 2016 12:39 pm

I hope you can take some encouragement from the physio noticing some muscle improvement. As far as her suggestion about a dermatologist and laser treatment - I totally understand that it sounds scary, especially the mention of laser therapy. But maybe think of the suggestion as a good thing in that it means another possible treatment option exists for you to investigate. Better to hear suggestions than to have health professionals saying that they can't think of anything else to try!

It does seem like if you had a skin condition then one of the gynaecologists you've seen would have picked it up - after all, they are looking at that part of women's body all the time, so they should know what 'normal' looks like! But it's always possible I guess that there's something very subtle there that only a vulvar skin specialist might detect. Hopefully as you continue with what you are doing then you'll see more improvement and can just keep the dermatology option to one side. Smile

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Re: Referred to a women's health physio now...

Post  WaahwaahUK on Thu Aug 18, 2016 12:46 pm

Yes, I must acknowledge that she noticed some improvement! I think I come away sometimes automatically negative because of generally how I'm feeling. A little redness is could just be a little redness. As you say, seeing another specialist might be useful though indeed. Thank you. For noticing the good stuff and thus making me notice it too! Very Happy

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Re: Referred to a women's health physio now...

Post  emalita on Thu Aug 18, 2016 2:44 pm

That's wonderful that you're improving! YAY for small victories Smile

I wanted to mention that I do have a skin condition (dermatitis), and even a gynecologist who specialized in dermatologic conditions of the vulva didn't think anything looked wrong. Unless you have something that stands out like lichen sclerosus, warts, cancer, etc., even specialists who look at vulvas every day won't know what your normal is. So I just wanted to say that only you will know sometimes that something is off with your vulvar skin unfortunately.

I hope you keep seeing improvements!

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Re: Referred to a women's health physio now...

Post  WaahwaahUK on Fri Aug 19, 2016 2:15 pm

Hi emalita, yes I'm keeping an open mind for sure. I do have incredibly sensitive skin anyway, all over my body. I've actually just bought some yes vaginal moisturiser to see how I get on with that as I read it's very good for any skin conditions down there and I wondered if it might just soothe a bit if nothing else.

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