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» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

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» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
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Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

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New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

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Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

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can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Constant pain, I want to die.

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Constant pain, I want to die.

Post  Meggiemay on Fri Jun 02, 2017 4:29 am

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on Nortriptyline (2 months, no change) and lidocaine (doesn't help) but I haven't had any improvement. Now the doctor wants to do a biopsy to rule out any skin conditions (even though she said everything looks normal down there). I feel like this is a nerve problem and i'm scared the biopsy is going to make everything worse. The pain is all the time, unprovoked, it never gets any better. It all started after I had some inflammation after sex. The inflammation has been gone for 2 months but i'm left with this awful pain. I asked my doctor if I was going to be like this forever and she just looked sad and said "I don't know". It's debilitating, and i've had to go on medical leave at my job. I was also recently married and had to spend my wedding night crying with an ice pack between my legs instead of consummating my marriage (still haven't).

I'm in such a dark place emotionally, it's like i'm stuck in a nightmare. I honestly don't want to live  Sad

I can't talk about this with anyone so i'm looking for support but this group doesn't seem that active. If up to 15% of women get vulvodynia, where the heck are they?  No

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Re: Constant pain, I want to die.

Post  mary jane on Fri Jun 02, 2017 10:57 am

Hello,

sorry to hear you had to go through this.
I would start by going to the pharmacy and buying a lot of lidocaine gel or ointment, whichever they have and apply it every day for relief.

I am not sure it's nerve pain in your case, however nortriptyline or anitdeirepssants can take a long time to work. When I had mine it took 3 months to see any difference and got better relief after 4 months.
I would ask for Lyrica to be added on top of what you take. Which dosage are you on ? You would need at least 30 mg.

Your doctor cannot know when you get better ...it depends on the person, but yes people do get better.

Maybe you can benefit from pelvic phisiotherapy to desensitize the area as well..
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Re: Constant pain, I want to die.

Post  mary jane on Fri Jun 02, 2017 11:01 am

ok, now I saw that lidocanie didn't work for you ....
it sounds more like a skin or muscle issue ...I also get inflammation after sex, but mine is from the Bartholin glands with which I've suffered for years now.
Are you allergic to latex maybe ? I have this and I use skyn condoms instead, they are much better.

I used to get lots of inflammation around the area too..years ago .... it may be an immune reaction or allergy ... it;s so difficult to tell. Everyone with vulvodynia has different symptoms from what I see
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Re: Constant pain, I want to die.

Post  Meggiemay on Fri Jun 02, 2017 5:38 pm

mary jane wrote:ok, now I saw that lidocanie didn't work for you ....
it sounds more like a skin or muscle issue ...I also get inflammation after sex, but mine is from the Bartholin glands with which I've suffered for years now.
Are you allergic to latex maybe ? I have this and I use skyn condoms instead, they are much better.

I used to get lots of inflammation around the area too..years ago .... it may be an immune reaction or allergy ... it;s so difficult to tell. Everyone with vulvodynia has different symptoms from what I see

I'm on 25 mg of the antidepressant. After the biopsy results my doc is going to send me to PT and put me on Gabapentin (I don't think I can try Lyrica until i try this med). I'm not sure where the initial inflammation came from. It's happened a few times over the years but the pain and irritation always went away when the inflammation did. I have an autoimmune disorder so i'm sure it's connected. I'll try the skyn condoms if i'm ever able to have sex again (I can barely walk now). I just feel so hopeless since it's been months with no improvement. I tried to feel around for internal trigger points but nothing was painful.

I'm generally a positive person but this horrible genital pain is breaking me down psychologically. The fact that some women suffer for decades frightens me since my case seem pretty severe.

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Re: Constant pain, I want to die.

Post  mary jane on Fri Jun 02, 2017 6:17 pm

I'm really sorry to hear but just so you know, DR Google always shows the absolute fcukin worst, so don't trust him, ok ?

The vast majority improve or at least get remission from this condition! Remember people make an account, post once and don't come back when they've improved! Relax, ok so first of all your dose is VERY SMALL so no wonder you are in a lot of pain!

Try and increase your dose, 25 mg barely takes the edge off generally! Gabapentin is also good, surely once you start that you will feel much better.

Pain occurs in the brain and this is why we need these medications. For example, you can have major surgery and get nerve damage but this will not mean you have pain. Only certain people get nerve pain, no one knows why exactly.

Don't think of the area as damaged, it's just hypersensitive and sending wrong signals.

At my worst in 2013, I couldn't walk, wear underwear and had electric shocks. I had no pain once my meds kicked in later. So if I improved, anyone can, be it through pelvic phisiotherapy, medication, surgery for VVS sufferers, etc.

Try and calm down to make the medication work faster because the more you panic the more difficult it is for medication to work. Look at the success story subforum as well, people have recovered from this.

I am not sure what causes inflammation after intercourse, I have this too sometimes. the only thing my gynie found was very low lactobacillus and I now have a prescription for vitamin C pessaries and symbiovag. This was a german gynie, UK for some reason sucks at importing medication and there's not a lot here, not even Bayer aspirin from what I've seen.

I recall I once used VAGISIL cream for my inflamed vulva and it worked super well..it has zinc oxide in it and lidocaine, it's sold for itching but it took my inflammation away...maybe it can help you too, it's soothing ! Smile

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Re: Constant pain, I want to die.

Post  Meggiemay on Fri Jun 02, 2017 6:46 pm

Hmmm... my doctor told me 25 mg was the highest I could go on the antidepressant, that a higher dose wouldn't make a difference. She's nice but I don't think she has much experience with this. I'm scheduled to see a vulva specialist but not until November Mad (and i'm in the states!). I have a topical steroid for the inflammation, but it's been long gone and now the nerves (or something) are all screwed up. I'm trying to be patient but 24/7 severe pain is getting the best of me. I'm literally housebound, so I don't have much distraction.

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Re: Constant pain, I want to die.

Post  mary jane on Fri Jun 02, 2017 7:50 pm

hmm..not sure with dosages on nortiptyline, I think the maximum is 30 mg for this ....
I used to watch movies all day when I had paresthesias and pain..to distract myself

Anyway, there are other options for you: Cymbalta, neurontin and lyrica. can you ask for lidocaine patch at all ??

I can't tell if your pain is the nerves, muscles or skin unfortunately ... so not sure what to recommend...
does ice help at all? to numb the area?

I never had burning so I used to get relief from hot baths but I know for others using ice to numb the area works very well
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Re: Constant pain, I want to die.

Post  Meggiemay on Fri Jun 02, 2017 8:32 pm

Ice actually works well, it's really the only reason I haven't ripped all my hair out yet.

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Re: Constant pain, I want to die.

Post  mary jane on Fri Jun 02, 2017 10:07 pm

some tips I found here:

https://uihc.org/health-library/vulvar-vestibulitis


I never had burning so it's hard to give more advice Sad
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Re: Constant pain, I want to die.

Post  Lisa1627 on Mon Jun 05, 2017 5:06 pm

Hi meggiemay,

I am so sorry to read your post. I am in the same position although I think my pain is not as bad. I have a burning in my vaginal area and burning in my butt (think its radiating from my tailbone). You have been the first I have heard mention the butt like me.

I think mine is caused by nerve irritation from hsv. Which sucks. I feel like I am always contagious.

I'm going to have to go to a therapist because I have had this for 8 months and have lost all hope of it getting better. Depression has set in and I no longer want to go out with friends, or do anything social. I feel so alone.

I take lyrica and it helps but not totally. I hope you feel better soon.

Take care,
Lisa


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Re: Constant pain, I want to die.

Post  mary jane on Tue Jun 06, 2017 10:22 am

Lisa1627 wrote:Hi meggiemay,

I am so sorry to read your post. I am in the same position although I think my pain is not as bad. I have a burning in my vaginal area and burning in my butt (think its radiating from my tailbone). You have been the first I have heard mention the butt like me.

I think mine is caused by nerve irritation from hsv. Which sucks. I feel like I am always contagious.

I'm going to have to go to a therapist because I have had this for 8 months and have lost all hope of it getting better. Depression has set in and I no longer want to go out with friends, or do anything social. I feel so alone.

I take lyrica and it helps but  not totally. I hope you feel better soon.

Take care,
Lisa


Have you tried all the medications possible? There are a lot of combinations to try, if lyrica helps you can take it with an antidepressant or a second epilepsy medication like topamax which will boost its effect ...does lidocaine ointment help you? you can also ask for lidocaine patch for localised effect ...
I had buzzing inside my buttocks in 2013, it;s a nerve root irritated by the nerve endings in the vulva...
if your coccyx hurts, apply ibuprofen gel on it ...I had this too for 3 months..I haven't had the coccyx pain since.
medication for anxiety can help the anxiety as well as the nerve pain, see if you cat get clonazepam ...
I know I sound pro-pharma but nerve pain is an output of the brain and that's why you need to make the nervous system calm down and stop sending signals.
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Re: Constant pain, I want to die.

Post  Lisa1627 on Tue Jun 06, 2017 11:55 am

I tried Amitriptyline for a short time. Worked from 10 mg up to 30 and it helped but again, not totally. My Dr. did mention maybe taking the Lyrica with the ami, but I said I didn't want to take too many things at one. maybe I should try it?

I asked my Dr. for xanax but she said no. I will ask about the clonezepan.

I am happy to hear your butt pain went away. I hope mine does. Do you know what caused your's?

I just cant believe my life has turned out like this. I wish I knew how good I had it before all this. Right now I have a wonderful boyfriend that says he is going nowhere and we will figure this out, but its been 8 months.

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Re: Constant pain, I want to die.

Post  mary jane on Tue Jun 06, 2017 12:32 pm

Lisa1627 wrote:I tried Amitriptyline for a short time. Worked from 10 mg up to 30 and it helped but again, not totally.  My Dr. did mention maybe taking the Lyrica with the ami, but I said I didn't want to take too many things at one. maybe I should try it?

I asked my Dr. for xanax but she said no. I will ask about the clonezepan.

I am happy to hear your butt pain went away. I hope mine does. Do you know what caused your's?

I just cant believe my life has turned out like this. I wish I knew how good I had it before all this. Right now I have a wonderful boyfriend that says he is going nowhere and we will figure this out, but its been 8 months.

30 mg of amitriptyline is not enough, I used to take 50 mg...it literally did NOT work until I hit 50 mg Sad ..you are totally supposed to ADD something to amitriltyline, I used to take 50 mg of amitriptyline with 3000 mg of lyrica ..it's a combination any pain consultant or neurologist would offer a pain patient..
can you get a referral to a pain consultant? I used to see Dr Kothari at St Thomas hospital..she was the one who added lyrica to my regimen ...
I also have to add, you will experience side effects, sadly, but unless they are life threatening I would recommend you grin your way through it and tolerate them for a while . I keep seeing so many people who say they can't tolerate side effects, then they quit and start complaining they can;t get pain relief ... I had tons of side effects from amitriptyline.. if indeed you take medication for 6 months and nothing works at all, then you can try other therapies.
I don't know what caused my pain in 2013 ...a combination of severe anxiety and a small bartholin cyst ..which shouldn't cause pain ...so I am a medical mystery..I never had burning though, I had electric shocks, buzzing, tingling, electric feeling and stabbing pain. The pain used to move around and I felt inflammation but there was no inflammation to be seen at times.


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Re: Constant pain, I want to die.

Post  Meggiemay on Sat Jun 10, 2017 9:56 am

So now my doc thinks I might have pudendal neuralgia, which looks even harder to treat. Great : (

Just started taking 300mg of Gaba 3x a day. It's been 2 days but I don't feel much different.

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Re: Constant pain, I want to die.

Post  mary jane on Sat Jun 10, 2017 1:58 pm

Meggiemay wrote:So now my doc thinks I might have pudendal neuralgia, which looks even harder to treat. Great : (

Just started taking 300mg of Gaba 3x a day. It's been 2 days but I don't feel much different.

hello
2 days of gabapentin will not change anything, it takes at least 3 4 weeks, until you reach their maximum dose to work.
I've never heard of NEURALGIA triggered by sex, get a second opinion, I have read a lot about pudendal neuralgia and it's impossible to get this from sex or even thrush medication. you normally get it from hysterectomy or some other invasive surgery like bartholin gland removal.

There are 2 other nerves in the vulva, like genitofemoral and ilioinguinal. The pudendal nerve is probably irritated by the other nerves. You can change to Cymbalta, a lot of people who don't respond to tricyclics respond very well to Cymbalta.

careful what forums you hang around on, there is a condition called pudendal nerve entrapment which is a sham diagnostic. The pudendal hope forums promote this quackery surgery for it, many people have been disabled by this surgery. Be very careful which doctor you listen to.
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Re: Constant pain, I want to die.

Post  Meggiemay on Sat Jun 10, 2017 6:49 pm

mary jane wrote:
Meggiemay wrote:So now my doc thinks I might have pudendal neuralgia, which looks even harder to treat. Great : (

Just started taking 300mg of Gaba 3x a day. It's been 2 days but I don't feel much different.

hello
2 days of gabapentin will not change anything, it takes at least 3 4 weeks, until you reach their maximum dose to work.
I've never heard of NEURALGIA triggered by sex, get a second opinion, I have read a lot about pudendal neuralgia and it's impossible to get this from sex or even thrush medication. you normally get it from hysterectomy or some other invasive surgery like bartholin gland removal.

There are 2 other nerves in the vulva, like genitofemoral and ilioinguinal. The pudendal nerve is probably irritated by the other nerves. You can change to Cymbalta, a lot of people who don't respond to tricyclics respond very well to Cymbalta.

careful what forums you hang around on, there is a condition called pudendal nerve entrapment which is a sham diagnostic. The pudendal hope forums promote this quackery surgery for it, many people have been disabled by this surgery. Be very careful which doctor you listen to.


Yes, there is no way I have an entrapment, and I don't have pain only when sitting. Those forums can be depressing but i'm trying to arm myself with as much info as possible since no one seems to know what's going on with me. I've already spent thousands (thanks America!) trying to figure this out, and i'm not even close to fixing it. Did you ever take gaba? What doesage? Did you ever see a physical therapist?

I just don't understand why my nerves got so screwed up after inflammation and sex. People have multiple children with no issues, I don't get it. Maybe something about my nervous system makes this kind of thing more likely.

Even if these forums can get depressing, it's a blessing to know other women are going through similar things. I don't feel like such a freak. cyclops

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Re: Constant pain, I want to die.

Post  mary jane on Sat Jun 10, 2017 7:07 pm

I took pregabalin instead of gabapentin, it's a more modern version of it, a similar drug but with less side effects. It made my entire skin numb!! I loved it ! You could no longer tickle me and my entire skin sensitivity in my body was gone! IT was that powerful. First week on it I felt high as a kite, second week I had this numbness (so amazing), then third week I had results on the pain with touch ! The amitriptyline took away general pain but the Pregabalin took away the pain with touch, the residual pain.

Gabapentin is also good !

I weaned off prebagalin after 8 months on it because by then I had developed some side effects like memory problems..they didn;t interfere with my job but they did with my uni exams.

You're not a freak at all, in fact men can have this pain too, it's called chronic non bacterial prostatitis ! Men can have pains in their bladder, penis, etc as well.. no shame in this! these things can happen...

I also get inflammation after sex like you, interesting ..hmmm... the only advice I got for this was to take an antihistamine after sex and take a sitz bath using dead sea salt. A german gynie told me.

Have you tried Benadryl for this yet? Some people with chronic nerve pain report success on it ..
I read it on the Neurotalk forums
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Re: Constant pain, I want to die.

Post  mary jane on Sat Jun 10, 2017 7:08 pm

Yes I saw a PT in a hospital through my pain team in 2014. she was super lovely, however told me I have no internal muscle tension so she told me to purchase dilators and use them at home. I still have to buy those actually.

Seeing a PT is a great idea, they have lots of knowledge about nerves and ligaments
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Re: Constant pain, I want to die.

Post  Meggiemay on Sun Jun 11, 2017 12:34 am

I did take Benadryl. Unfortunately, it didn't help things.

I'm looking at Ketamine infusions now, people with neuropathy have found relief. Too bad they are very expensive and not covered by my insurance.

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Re: Constant pain, I want to die.

Post  mary jane on Sun Jun 11, 2017 8:37 am

Meggiemay wrote:I did take Benadryl. Unfortunately, it didn't help things.

I'm looking at Ketamine infusions now, people with neuropathy have found relief. Too bad they are very expensive and not covered by my insurance.

Ketamine infusions are done for people with central sensitization and CRPS, if you can get them that would be a good idea, why not?
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Re: Constant pain, I want to die.

Post  jungleclover on Wed Jul 19, 2017 10:55 pm

This makes me feel so much better. I have been crying so much. I will cry until I give myself a migraine. To be completely honest 2 months ago it got so bad I started saving money to buy a gun if I need to and I picked a date. Ironically my appointment with the valvular specialist is on that date I initially picked. I'm trying so hard to be strong. It hurts and it itches so much. And being sick this way just takes so much from you. You lose friends who don't understand, most physical activity, days at work, your health, peace of mind, and sex/intimacy with your partner. There isn't much this condition has left for me. But I'm going to keep fighting and keep working. I'm sending you so much love. Keep going. You aren't alone.

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Re: Constant pain, I want to die.

Post  Meggiemay on Sat Jul 22, 2017 9:41 pm

I wanted to update this thread.

I'm still in pain 24/7. Same symptoms, vulva/urethral rawness/soreness/irritation, painful clitoral hypersensitivity, some bladder pressure. Still no sex, I can't even have an orgasm without pain. Still super depressed, I can't believe this is really happening. I stopped taking the Nortriptyline, started taking 1200mg of Gabapentin. It takes the edge off a tiny bit. I'm in PT, but my therapist said my muscles seem ok, she's showing me stretches, but they aren't helping.  I had a vulva biopsy, it just showed non specific inflammation. I also had a pelvic ultrasound, it was normal. My Gyn dropped me as a patient because I wasn't getting better, she said there wasn't anything else she could do for me. I have an appointment with a Uro-Gyn at the end of August to check for IC.

I still can't believe how quickly all of this happened. I had normal, non-rough sex, got inflamed for some reason, now I have permanent damage and I feel like my life is ruined. How can I live with this horrible genital pain forever? I can't be touched down there at all. Never being able to have a non painful orgasm? Never peeing without pain? I can't even work like this. It's hard to walk. My new husband has been a saint, but we are only in our early 30's. How long can a young healthy man go without sex? Certainly not the rest of his life : (  I drew the short straw in life, he still gets to choose his straw. Sometimes I feel like suicide is the only solution. 6 months ago I was so excited about my wedding and looking forward to a happy future. Now i'm thinking about planning my own death. Why aren't there more effective treatments for this awful condition? I wish I could move my pain to a different part of my body. Genital pain is psychologically devastating.

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Reply to update

Post  jungleclover on Sat Aug 05, 2017 7:45 am

It will get better. I know it's so hard but believe me there is a light. I have gone into remission before and you will too. With this problem you have to be a fighter and you can't give up. You have to keep bothering doctors until they help you. Be the squeaky wheel that gets the grease. It's exhausting and this issue takes so much from you. You lose the things you love, walking around, work, intimacy with your partner, and your own sanity. And worse yet this is a private problem so when you are grumpy from all of the pain you are in you can't explain it to other people. It can be so exhausting and isolating. But you are not alone. Keep trying your best to make it through. Ice down there is a life-saver.

As far as your husband goes I've had the exact same thought with my boyfriend. He has been so wonderful and I feel so terrible dragging him down. But know he loves you and you deserve that love. Don't think that just because you are having difficulties sexually at this point in your life that you don't deserve love. And just to reiterate this level of pain won't last forever. Remember that. Hold onto that. Do not quit. There may be ups and downs but just because you are in a valley doesn't mean a hill isn't around the corner. xoxoxoxox

jungleclover

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