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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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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 …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

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I cant take it anymore!! Thinking of ending my life, I dont know what to do :((((

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I cant take it anymore!! Thinking of ending my life, I dont know what to do :((((

Post  LeonieFlower on Thu Oct 09, 2014 9:51 pm

Hi, I'm a new lady here. Found this forum yesterday.

I am 26 and have been suffering with this hell of a disease for 8 years (diagnosed 2006) and it has only gotten worse year after year... I am on pain meds and tricyclic antidepressant (amitriptyline) which isnt helping. I get erratic when taking the meds. I have tried antibiotic creams, lions mane (supplement), zinc oxide, cold packs, progesterone cream and coconut oil, probiotics, have considered expensive surgery but was told the success rate for pain relief was only 20%, acupuncture did nothing for me!

I can't run or walk fast without major pain, peeing is sometimes so painful I have to try to stop midway through and a should-be 2 minute bathroom visit can instead last up to 15-30 minutes just curled up and crying. I have to wear loose boxer shorts, sleep with a pillow between my legs every night, shower in cold water, sex really hurts so is out of the question and because of my misery and being unable to have sex, my boyfriend left me 2 months ago.

I'm depressed, sad, in constant pain, miserable, and 2 months ago started feeling hopeless right after my BF left me. And what makes it even worse is NO ONE AROUND ME UNDERSTANDS WHAT VULVODYNIA IS LIKE. Before I was diagnosed I was also told by 2 different doctors my pain was psychological.

Sometimes I just wish my life could be taken now. I can't stop thinking of ways to make that happen and was close to doing something bad 4 days ago.

I don't see a way out, feel so alone with this and so I don't know what to do with myself Sad Sad

But I'm happy there is a forum like this so I can at least express myself to people that know what's up.

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Re: I cant take it anymore!! Thinking of ending my life, I dont know what to do :((((

Post  Sparkle on Fri Oct 10, 2014 7:43 am

Try and stay positive I know it's hard and life can seem pointless at time but I'm sure your have plenty to live for.. Ita true that this condition can take over yor life so that it becomes the main focus and living with pain 24/7 like you do must be so hard. I feel for you and hope that you can find the strength to push away those bad thoughts.
In sorry you are feeling so low at he moment.
I know it's seems like you've been on such a long journey alrwady with nothing helping but you have to keep up the fight and someday you will find what works for you.

When you have time try and read everything in this forum there are so many tips and advice on here to help. Start writings them down and go back to the doctor with them. You will find sonthing one day hun. Chin up x

What do you have? Generalised? Or provoked? I'm guessing from your post ita generalised.
How old are you and what county are you from?

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Re: I cant take it anymore!! Thinking of ending my life, I dont know what to do :((((

Post  Sparkle on Fri Oct 10, 2014 7:44 am

Sorry I just saw you said your 26. Hard living with this so young. But you are too young to give up! You will find your solution please don't give up don't let this horrible condition win!

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Re: I cant take it anymore!! Thinking of ending my life, I dont know what to do :((((

Post  Sparkle on Fri Oct 10, 2014 7:47 am

And just to add the bloke that left you is a knob. Lol to be blunt! He clearly is selfish and cares only for himself u don't want somone like that in your life. Plenty of girls on here have bf who have stayed and supported them even some who have found new love with this condition at it worst. Thers so many sweet guys out Ther don't let what he did dampen your confidence with or without this you are worth so much more then that idiot xx

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Re: I cant take it anymore!! Thinking of ending my life, I dont know what to do :((((

Post  sailor_moon on Fri Oct 10, 2014 9:00 pm

Don't give up!

I'm the same age as you so I know how f*cked up it is being in what is supposed to be " the best years of your life" and being absolutely miserable.

My symptoms are different to yours and I have only had this for a year and a half... I can't imagine what 8 years of this hell must feel like for you Sad

I guess over 8 years you have tried a lot.

Can I ask if your symptoms get worse at certain times of the month? Are your periods regular?Are you on birth control?

I'm guessing you have already seen a vulva specialist.

Have you had a hormone profile blood test? Which is when you get a blood test every week for a month to see what your hormones are doing? Whether they are flatlining, whether there is estrogen dominance or lack of, testosterone levels, progesterone ect. Your hormones vary from week to week, a one off hormone test won't show typical hormone imbalance because your levels are always changing.

As hard as it is, try to hang in there. Sad

Not all guys are douche bags. My husband has stuck by me 100% through all this. He suffers from degenerative discs in his back and suffers chronic pain himself so he understands what it's like to be suffering 24/7 and knows how hard it is to deal with. And no, he's not old, he's only 27 himself. And like he said, he knows it's not my fault, he knows I Don't wish this shit upon me. And most importantly, he said that "As good as sex is, it should not be the most important thing in a relationship. It should be at the bottom of your list, not the top.If you REALLY love a person, sex doesn't matter. Sex is a luxury, not an essential".

Another thing I have learned is that whether or not my husband sticks by me, I need to be selfish. I need to stop worrying and obsessing over whether he will leave or cheat. If he did, he's not worth it and he should not be my first priority. Either way, my first priority is my health. I need to focus on getting better.

I guess it's all easy for me to say seeing as you have had this so much longer than me.

What country are you from? Many women on here have found success and if you let us know what country your from we might be able to suggest a doctor for you.x
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Post  lavrose on Sat Oct 11, 2014 1:46 am

ok, don't despair, Ive been there myself and Im 34 years old, and ive gone thru YEARS and several relationships thru this BULLSHIT, so you are not alone!
I have interstitial cystitis, (a bladder infection/feeling/pain for life) so yes, def been very suicidal before, seriously contemplated it. Altho not cured, im a lot, lot better. I take herbs and basically keep the "Thing" under control.
I do essential oil and Boric acid "up in there" to feel comfortable during the day, everyday, a lot of lube during sex ALOT, of LUBE..and other herbs for the bladder/pain problem. Coconut oil is wonderful, etc, just do that, until you can find a cure. etc. Please, pray about this and gut it out, theres still hope. I think its some kind of infection and getting the money together to get a doctor to give IV antibiotics and antifungals in New York, so be patient. The vagina is a weird, and vulnerable eco system, that gets thrown out of balance. Its either bacteria, or cancdida/yeast aggravated by antibiotics yet antibiotics are the only cure for infection. So key is kill the infection, then get your flora/body back in balance, and the candida under control. I know its sound stupid, from my standpoint your young! only 26. This thing basically stole my entire sex life, a chance at a truly happy fulfilling relationship, and the ability to have more children. Keep going!
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Post  lavrose on Sat Oct 11, 2014 1:51 am

You can also try surgery, Many women have had success with it. prolly what im gonna do if Dr Thoth doesnt pan out.
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Re: I cant take it anymore!! Thinking of ending my life, I dont know what to do :((((

Post  Sparkle on Sat Oct 11, 2014 10:02 am

Leonine flower, are you Ther? Just dropping in to make sure you are ok? X

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Re: I cant take it anymore!! Thinking of ending my life, I dont know what to do :((((

Post  LeonieFlower on Sun Oct 12, 2014 9:06 pm

Thank each of you so much for caring. It means a lot to me to have a group of people that understand what it's like to go through this. I'm still here Sparkle, don't worry, I'm trying not to "go anywhere" if you know what I mean. I just feel like I can't control what I'm doing when the symptoms are at their peak of intensity. It's hard to stay positive with this issue but I try my best.

I'm from the UK. Have also sought for a solution in the U.S. in the past to no avail.

My symptoms are generalized but get worse around my periods, which are on time. I've had hormonal testing done and I was told I was low in thyroid hormones, DHEA, estrogen (I told my doctor I have mild vaginal dryness and he said this was probably the cause) and progesterone while everything else looked good. They didn't have a solution for my thyroid but told me to eat iodine enriched salt. For everything else they suggested hormone replacement therapy if it got worse... But now I realize the tests might not be accurate because they were one-off tests done whenever I had a doctor suggest it to me, like sailor_moon said. But each time I was tested through the years the DHEA, estrogen, and progesterone always came back low.

I'm happy for those of you girls that have supportive boyfriends/husbands that chose to stay and be there for you through this major hurdle. I was truly dissapointed when my BF decided to leave me in such a vulnerable condition at a time when I felt that I needed his support and encouragement the most.

I will try to read as much of the forum as I can.

Lavrose, I avoided a vestibulectomy due to the low long term success rate I was warned about. I honestly thought they would push it on me and leave out the bad news for the sake of the $$$, but they were nice to me. But I don't know... maybe I should consider it again even tho I'm really hoping there is another way. What herbs are you taking? And what does Dr. Thoth do (does he have a website I can check)?

Sailor moon, yes, I've had a chance to try so many different supplements and therapies, especially when I was in the U.S. and apparently every health guru and alternative health care practitioner had THE solution for me. Only that they didn't... but at least I tried.

It's tough and I have the "really bad" moments now and then but I'm hanging on girls. Thank you <3

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Post  lavrose on Tue Oct 14, 2014 6:09 pm

Hes actually a fertility Doctor, but Ive read all over the internet in various forums about how he has helped with other conditions aswell, from protatis to interstitial cystitis, to vulvodynia, etc, he basically loads you with tons of antibiotics andtifungles for 2 weeks, with I'vs and uterine washes and testicular prostate washes for men, etc, here are some links, this one from ELLE magazine::
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Maybe Baby: Infertility's Controversial Cure

Patients travel from as far away as Europe to visit Attila Toth, MD, a physician in New York who claims his extreme treatment will help infertile women conceive. Couples are going home with babies, but doctors think his methods are far from sound For 10 days straight in the summer of 2010, Samantha*, a lawyer from Greenwich, Connecticut, and her husband came into New York City to visit the office of Attila Toth, MD, a fertility specialist who thought he could solve the mystery of why, at age 28, she couldn't get pregnant.

On the first morning, Toth put in their arms IVs that delivered an antibiotic that they each carried around in a fanny pack for the entire 10 days. He then threaded a catheter into the pinpoint opening of Samantha's cervix so that, for the next hour, a cocktail of four antibiotics, the steroid Medrol, and a large dose of the yeast-infection medication Diflucan could wash out her uterus. The first two mornings, Samantha suffered excruciating cramps from these daily washes, but by the third, the pain had subsided, and she settled into a routine of watching Dr. Phil on the examining-room television until Toth returned to remove the catheter and insert a paste containing a fifth antibiotic that would be absorbed into her body for the next 24 hours. Meanwhile, every other day Toth gave her husband a painkiller and then injected antibiotics through his rectum and into his prostate; twice Toth also injected his seminal vesicles. After their last visits, Toth gave the couple prescriptions for still two more antibiotics that they'd take for a month.

When their treatments were over, Samantha and her husband returned to see Toth, who declared them both "clean," by which he meant they were free of Chlamydia trachomatis, a bacterium that can cause infertility in women and has been linked to recurrent miscarriage, premature labor, ectopic pregnancy, and pelvic inflammatory disease.

Outside of Toth's office, such an elaborate antibiotic assault on chlamydia is practically unheard of. The standard treatment—which health officials say is at least 97 percent effective—is a seven-day course of the antibiotic doxycycline or a single dose of azithromycin. But Toth thinks chlamydia is far harder to detect and treat than most doctors do. In fact, he thinks it may be responsible for a substantial portion of the one third of infertility cases that doctors now classify as "unexplained."

Toth, 72, came up with the idea of administering intrauterine washes (also known as lavages) to patients in the late 1970s after learning about the horse breeder who successfully put the racing legend Secretariat to stud. The breeder would flush out the uteruses of mares with antibiotics to kill the microbacteria that could interfere with conception. Why couldn't humans benefit from such a therapy too? Toth thought. In 1977, he started testing infertile couples for a little-studied bacterium called mycoplasma that had been linked to infertility. He gave men who tested positive an oral antibiotic, and many of their wives soon became pregnant, Toth says.


Around this time, public health officials were becoming increasingly concerned about chlamydia, and his boss at New York Hospital suggested he look into it. "He said, `That's far more important and can do much more damage to the reproductive tract' " than mycoplasma, Toth recalls. Pictures of this were telling: scarred and blocked fallopian tubes, uterine adhesions, blocked epididymides (the coiled ducts that collect sperm). "I thought, This is destroying people's anatomy," he says.

At first, Toth treated people who tested positive for chlamydia with a conventional dose of oral antibiotics. But when cultures from his patients continued to show traces of the bacteria, he lengthened the time to four weeks. He added another anti­biotic. Then he doubled the duration of both medications to eight weeks. "The longer they took them, the faster they got pregnant," he says. In the early '80s, he introduced IVs for men and women; patients would cluster in his office basement while they were hooked up to the then primitive machines and call themselves the "IV League." By the late '80s he had refined his regimen further, introducing the uterine lavages; five years ago he added prostate injections.

Toth, a man whose bear-hug personality endears him to his patients, now sees some 150 couples a year for infertility, a third of whom, he estimates, are referred by gynecologists, urologists, or fertility specialists who are at a loss as to how to help them. Gideon G. Panter, MD, a Manhattan-based gynecologist and infertility specialist, has sent Toth 40 to 50 patients, he says, and "always with the same story," of unsuccessful IVF cycles, including one couple who traveled from Europe after four had failed. "Toth has been saying this stuff for 20 years," Panter says. "But fertility medicine is big business. Doctors don't stop to think, Wait! My patient's IVF cycle failed twice. Something else must be going on. Toth's treatments cut into the economic overhead of infertility treatment. He's ahead of his time."

After finishing medical school in Hungary in the late '60s, Toth emigrated to the U.S., where he received a fellowship at the Cleveland Clinic and finished a residency in pathology at The Mount Sinai Hospital before opening up a private practice at New York Hospital in 1977. Fifteen years later, he moved his practice to the Upper East Side townhouse where he remains today. A tall man with a mustache, a full head of sandy brown hair, and a thick accent, he avoids conferences and has published infrequently. He says he encountered such cynical resistance from the medical community early in his career that he retreated to his office and relied on his evangelistic patients' word of mouth to grow his practice. "I just became frustrated by the lack of interest in the role of infections on fertility, no matter what ideas I put forward," he explains. "So I treat my patients according to my best understanding, and my reward is seeing them get pregnant.""
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Heres another blog from someone who has IC..

""
johnshetty

11-24-2005, 08:33 AM

Hello all:

I read with some dismay the thread put up around July this year entitled “greatly helped by innovative antibiotic treatment”. That thread is now closed so I decided to start another one to say what I have to say on that thread, and on Dr. Atilla Toth.

Dr. Toth is better known among male pelvic pain patients such as myself than among femal patients (I seem to have some combination of prostatitis and cystitis, not sure how to best describe my condition). He is certainly a fully certified MD but not a urologist, I believe; rather, he has some sort of speciality related to infectious diseases and laboratory analysis (there is a name for it, cannot remember it now). He is upfront about his training and specialties, or he was with me.

His methods are definitely suitable only for pelvic pain patients with pathogens like bacteria, fungi, etc. – and he does have an in-house laboratory that uses much more sensitive techniques for detection of these pathogens (some of them, at least) than most other laboratories. He does use an aggressive approach called by one of the posting persons (Allibeth) the “air, sea and land approach”, i.e. using IV, intra-urethral applications and also injections into the prostate (for men), or the paraurethral glands (for women). I believe, though, that not everyone would get this full “air, sea and land” treatment; some may just get IVs, for example.

I saw him myself because I seem to have a combination of symptoms related partly to bacteria (detected by him as well as elsewhere). I have been considering his treatments, but am still not sure about them because he did openly tell me that in cases like mine there may not be a clear cure. I may have some relief for a few weeks or months and then have to come back for more treatments if symptoms come back as they may in my case. Every case is different – he was upfront about that, and about the possibilities of success or failure. Some cases (with some types of pathogens) may be much more readily curable than my case.

In any case, I tend to believe Allibeth and Deb when posting about their success with Dr. Toth’s treatments, and there must be others like them. I believe them regarding their own successes, but I do think that they may have been a little over-positive about the approach as a whole. (For example, it was mentioned that Dr. Toth has success with every IC patient that he treats, but even Dr. Toth would probably deny this – he was quite upfront with me, for example, that mine was a difficult case, it depends on the case.)

As Allibeth says, the approach would only work for those who have pathogen-related cystitis in the first place. This brings us back to the debate about what percentage of patients have these pathogens to begin with – I don’t know the answer to that, but I know that many standard lab techniques cannot detect many of these pathogens. Allibeth said that she experienced some partial relief from antibiotics before going to Dr. Toth, and this suggested to her that his methods may prove useful for her. I think that for patients who have no indication at all that they may be helped by antibiotics, antifungals, etc., they are probably less likely to be helped by Dr. Toth’s methods.

Another issue is that some people may react adversely to more aggressive or invasive approaches. For example, there are those who have developed bad and perhaps lifelong symptoms after bladder instillations, bladder investigations or even cystocopies. There may be negative effects from injections into the prostate or paraurethral glands. Relatively aggressive methods like Dr. Toth’s may, I think, have some risks, and people should do some thorough research on this before going ahead. Another risk that is common to all the antibiotics/antifungals approaches is, I believe, the risk of fungi or other pathogens developing due to use of strong antibiotics.

I know that there were many skeptics on the board, asking why Dr. Toth was not doing research on this methods, why he was not presenting the results at urology meetings, etc. Well, some people are into research and others are not, it does not mean that his methods are not useful for some. Also, how would one find a control group for his methods? Would one put patients through his aggressive techniques, telling them that they may (or may not) be getting the actual drugs?

I do not necessarily agree with the moderator’s comments that someone considering his methods should make a joint decision regarding this with his/her own doctor. I had noticed that most doctors tend generally to be skeptical of things that they are not very familiar with themselves, even treatments that could work – anything different tends to be looked on with suspicion. It does depend on the type of doctor that you have.

The first thing is to decide, I think, is whether to go the antibiotics/antifungals route or not. If yes to the antibiotics/antifungals route, there are several options to consider, with Dr. Toth being only one of them. Oral antiobitics should be tried first, and then IV antibiotics and of course the latter can be done with other doctors. Dr. Toth’s approach is probably the most aggressive of the antibiotics/antifungals approaches. For some patients, I have no doubt that his approach has been or would be effective, and may be the only one that can be effective for some patients. As always, there are pros and cons to each approach, and many things to consider.

I do think that even for those with pathogens, there are underlying factors contributing to them remaining that way, that may need to be addressed. For example, in particular, they may have poor overall or local immunity. Most doctors ignore this aspect, which I think is a mistake. I am not a doctor nor an expert, unfortunately, but some have tried boosting immunity along with administering antibiotics/antifungals. The boosting of immunity can be done by administering natural substances like Immunocal (recommended 3 or 4 packets a day for patients with diseases related to immunity) or even interferon (I read about the latter being done on the Internet by Dr. Dimitrakov for Chlamydia patients.) Then there are the Eastern European doctors that have been using enzymes such as Wobenzym or others; administering these along with the antibiotics/antifungals is supposed to make them much more effective.

Finally, I was disappointed that the thread on Dr. Toth degenerated to some name calling at the end, regarding criticism on grammar/word usage or some silly thing like that. This sometimes happens on forums on male prostatitis and elsewhere, too, and it is unfortunate because it prevents some people (like myself sometimes) from posting. In fact, I was reluctant to post this particular piece, but I think it is important to relay my thoughts and experiences regarding Dr. Toth anyway.""

Regards, John
(johnshetty1@yahoo.com)
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Hes in New York and his treatments are about $10,000 a piece. He recommends treating partner aswell, if you don't have one right now, that just makes things simpler Smile
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google..

Post  lavrose on Tue Oct 14, 2014 6:12 pm

Just do a little research, hes all over the web. on different forums, Ive read many peoples testimonies of cures, and improvement after seeing him, so I'd say its worth a try.
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Re: I cant take it anymore!! Thinking of ending my life, I dont know what to do :((((

Post  RoseKa on Wed Oct 15, 2014 9:28 am

Poor thing, i know what you are going through and its sad to know youve been dealing with it for so long Leonieflower but please try and keep your spirits up, hang on and dont stop looking for an answer! When i found my answer on this forum in july it took 2 months to become pain free... i just had to do what it took.. we can heal from this miserable pain... Read this thread because it could help you as much as it helped me get rid of the problem, and also helped my mother with her neck, shoulders and headaches and my hubby with work related low back pain http://vulvodyniasupport.forumotion.net/t622-pain-free-with-dr-robert-morse

Just know that there are beautiful people here and out there that truly care and will help if they can

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Re: I cant take it anymore!! Thinking of ending my life, I dont know what to do :((((

Post  Sparkle on Wed Oct 15, 2014 9:51 am

Hey leonieflower, Glad you are ok and still with us! I know it's horrible when u are going through so much pain or have a bad day but hope is all we have... Don't let it slip away.

I have been using lidocaine once a day after a bath or shower. Taking vitamins- Calcium citrate. Magnesium. & fish oil and I rub vitamin e oil down Ther everyday and night. I also use coconut if it gets sore. I only wash with aqueous creme or vani soap and not washing my hair in bath/shower anymore. This has reduced my pain because but not taken it away. I'm still getting pain but it's not as bad as it has been.
I have different to u mine is localised. So I really feel for u havinf to deal with this pain 24/7. I would try some of my suggestions and see In a few weeks how your symptoms are. I also not eating as much sugar and I think that's helped too.

In time we will all find our solutions we just have to not give up! I'm going to try ami beg of next month and I hope to get rid of the pain with that. I'm just scared of side effects!!!

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Re: I cant take it anymore!! Thinking of ending my life, I dont know what to do :((((

Post  bluejean on Thu Oct 16, 2014 3:33 am

Hey Leonieflower, I just read your post and I'm new on here also. My husband left me last year and had a baby with another woman. I never dreamed I would develop such a painful illness that would affect my life so much. The coconut helps me the most. I've started using essential oils a month ago and I've seen some improvement too. I'm a lot older than you........48.......So I've thought maybe I was going through menopause and that what all this was about. Last night I took my first Primrose oil pill..........one of the many things I've tried. Hang in there and keep on researching. I'm so glad I"ve found this forum to share what I've learned and see what others or learning.

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Re: I cant take it anymore!! Thinking of ending my life, I dont know what to do :((((

Post  Sparkle on Thu Oct 16, 2014 10:21 am

Hello blue jean,

What are the primrose oil pills for? Let me know how u get on with it. I would like to try the more natural route before they stick me on ami.

I'm sorry to hear about your husband. Did he leave after u got vulvadynia or before?
I've also used coconut oil but I find vitamin e helps most.
Do you have provoked or generalised?

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Post  bluejean on Mon Oct 20, 2014 4:46 am

Hi Sparkle,
I have generalized. I've tried to figure out what provokes it but it seems to come on when I least expect it.
I read that Primrose oil is good for menopause and dryness. I can't really tell much difference though.
I'm going to try the vitamin E oil this week too.
I know it's not provoked because I havn't had sex in over a year.

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Post  Sparkle on Mon Oct 20, 2014 9:14 am

Hey again,
Just replied to your other post :-)
Mine is provoked but I also get it if I wear jeans to work or if Ther is a lot of pressure on "my area". Somtines being un comfatable in chair at work can bring it on. So it can come on suddenly too. Then it's a different sort of pain. It's like a dull ache all day and random shooting pains. The pain on touch is like stabbing pains and burning through sex. Both are getting better now though.
What's yours like?

Defo use vitamin e oil. The One I use is organic I shall get the name for you tonite and post it here. It doesn't burn wen u apply it maybe tingle slightly. Are u taking any vitamins?

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Post  Sparkle on Mon Oct 20, 2014 9:40 pm

As promised ; Dr organic, bio active skin care- organic vitamin e pure oil complex.
It has a combination of rose oil,rose hip oil and jojoba oil.
It's about a £10, and I got it Holland and barrets. I'm from the UK.

It's really helped me :-)

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Post  BpCookie on Thu Oct 23, 2014 3:30 pm

Hello Sparkle, There was a time in my life when I wished I would just die. Dr.s, meds, creams and oils weren't working. I would lay in bed and cry. One day my depression turned into anger, I was angry at what I had, angry that it had power over me and I wanted to take back that power. So I did research, a lot of research, started looking for Dr.s and specialists. I went to so many Dr.s and tried so many things but I didn't give up. I just kept searching. Finally found a Dr. who helped me. My pain lvl has been reduced by 30% and I take Lyrica twice a day which helps with about 20% and also I use Lidocain ointment twice a day. Its not perfect but its better then before.

I have Vulva Lichen Simplex Chronicus. Daily burning pain. I had to accept that I had this thing that had a name that I could hardly pronounce and that most nurses haven't even heard of before. So now I plan my days around the pain. There are a lot of things that I can't do but there are also a lot of things that I can still do. I am thankful for that.

Never give up!!! Hang in there hun. Keep hope in your heart.

hugs to you

Cookie

p.s. Im perimenopausal and I use a small bit of A and D ointment on the inside of my Labia Minora. You may want to try it. Smile
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Post  Sparkle on Thu Oct 23, 2014 9:43 pm

Hey bpcookie,
Thank u for your comments :-) I'm ok atm I'm not at a stage where Im depressed. Although I have been Ther thia year it was a dark time for me. But I've made so many changed things are slowly getting better. Today's a low pain day for me, the lowest it's been in over a year. I feel hopeful. (Btw i didn't write this post just commented on it)

So u have LS? That's rough :-( they tested me for that. I did somw research on it before I got results so I can only imagine wot it's like for u. Constant burning must be hard to live with it's good u still stay positive. I hope we all find our solutions one day. What's lyrica? I'm happy for u that your pain has decreased with your methods :-) keep it up!
I'm not taking any meds atm trying to keep off them if I can. I used anti deprwssents before and I sisnt get on well with side effects. In on vitamins, lidocaine and vit e oil. My pain has reduced about 80% in last 3 weeks. Ive also been trying baking soda baths in the last week. They help too. Have u tried those?

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Post  EverythingIsDifferentNow on Fri Oct 24, 2014 8:44 am

We know what you feel like and at least there are people who understand what you feel like on this forum I love you Please do not give up. There have been women who have dealt with this TERRIBLE disease for 20 years and found a cure. I'm not saying it will take you that long to find a cure, but i want you to know that there IS A CURE. And if you want to vent please do it on here and we'll all help you and be here for you no matter what (: don't give up don't give up don't give up your life is not vulvodynia, it will change one day and it will be worth it

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Post  BpCookie on Fri Oct 24, 2014 2:00 pm

Sparkle, Lyrica is a medication that is usually given to those who have Fibromyalgia, it helps with nerve pain. Smile
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Post  diagnosedafter8yrs on Mon Oct 05, 2015 11:41 pm

I have considered suicide a lot lately I have no quality of life!!!I've been suffering for 9 yrs before diagnosed. I've been to my GYN never even had as much as a yeast infection. Vulvodynia has taken over my life. I was diagnosed 6 months ago and now get injections. Sometimes it works most of the time NOT!!! it's been 3 days of constant pain. My husband don't give a shit. He don't understand. The only time during the month I get relief is during my menstral. I cannot begin to list all the ways to off myself!!! VULVODYNIA SUCKS!!!! my menstral comes around the 9th of the month. Yayyyyy!!!

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Post  BpCookie on Tue Oct 06, 2015 3:33 pm

Hi hun, There was a time in my life when I wanted to die. I thought there was no hope and I couldn't imagine living the rest of my life with this. Now I am so glad that I didn't die.

There is a specialist out there who can help you and all you need to do is find him/her. You may have to go through many different Dr.s but don't stop looking. I did google and yahoo searches almost every day. I saw lots of different gynos, nerve specialists, vulvadynia specialists, pain specialists, dermatologists, every different kind of Dr. that I could think of. I finally found Dr. Watters who cut my pain down by half. Unfortunately my Dr. retired and now I'm seeing a different gyno.

I've had to accept my pain and accept the fact that I may not be able to do the things that I used to do. My pain may get worse or it may get better but I refuse to give up. I will keep on fighting.

So don't give up honey.

xoxoxo
Cookie

p.s. why do you get relief when your on your period?
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Post  diagnosedafter8yrs on Thu Oct 08, 2015 7:24 pm

Cookie I wish u knew why I get relief with my period. I would like to thank you for your kind words. I do have a gyno at lankenau hospital DR. GAYNOR. I love her to pieces, I've been getting injection's not sure what the med is, I get 75% of relief. The last 6 Mo. I've been ok however, this month since last Friday I've been in excruciating PAIN!!!! I go see Dr GAYNOR on the 13th I am counting the days.... I did call and speak to the receptionist (Carol) great person!!!! Dr. Gaynor is so busy that Carol is working to squeeze me in (fingers crossed). If you are from the Philly area pls make an appointment with Dr GAYNOR I have been to at least 10 other gyno/ specialist's and always I heard "well your pap smear are all negative" I've never had as much as a yeast,uti,std,NOTHING!!! I've been tested for anything and everything. I've been to the E.R, I lost track of how many times before I was diagnosed. How frustrating trying to explain vulvodynia pain to a bunch of Dr and nurses that are so JADED by ppl that go to the E.R for pain JUST TO GET PAIN MEDS!!!! several times after being looked at as if I was just there for pain meds I TORE UP THE SCRIPT AND JUST LEFT, their expression was PRICELESS!!!! I hope you keep fighting as well. Thanks again!!!! BTW I would love for people to be more aware if VULVODYNIA!!!!!

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