The horror won't end...

I have reached rock bottom once again. I have lost hope. It is now officially 2 years since I was plagued with this horrific condition. Unprovoked itching and burning...Every single day.15 doctors later...I was due to have a laproscopy and hystoscopy today to investigate internal causes of my discomfort.  I was literally just about to be wheeled into theatre when my doctor came in and said there had been an accident and that he could not do my procedure due to the emergency needing the theater  room. So after an 8  month wait  just had to change back into my normal clothes and leave. And the hospital can't even tell me when my appointment will be. Being a public patient sucks. What's worse is I had booked to go private at the end of the month but the public hospital rang and said they saw I was a priority on the waiting list and that they had a cancelation.  Seeing as I hadn't made payments to the private procedure I was overjoyed at saving $3000, a lot when you are on minimum wage like my husband and I and trying to pay a mortgage.  And it has all been thrown back in my face. I can't stop crying. I feel I'll like I want to throw up . And I have chronic gastritis so if I do throw up I won't be able to stop once I start.

Is There a light at the end of this long dark tunnel? Because I am struggling to believe there is. I am struggling to believe in anything positive.

This condition has completely destroyed my life.It has destroyed my sex life, I cannot have sex without being super itchy and sore afterwards, lack of sex does put a strain on the relationship despite my husband being super supportive.  I can't have a child with this shit....I just can't. ...what if it makes me worse getting pregnant? Let alone what a birth would do...I couldn't handle it. I have not had a holiday in 3 years as all my money goes to funding this shit....With no result. I am trying to scrimp and scrape every spare cent I have in case I need a vestibulectomy. ...but seeing as I itch all over a vestibulectomy probably is not an option for me, it probably wouldn't be successful.  I hate my job but can't afford to look elsewhere as I need time off for doctors and Noone would keep me employed.
Am I am no longer social. I have no desire to be social. I used to be very fit and active before all this, now I can't because if I exercise it just irritates me more. And I feel as I am such a burden to not only my husband but my mum, as she has been the one who has done everything for me and helped me out financially.  I feel so guilty.

For those if you who don't know my story, this all started when I did 3 things differently,  all at the same time: I came off the pill, I had laser hair removal and I used a feminine wash. I have had swab tests, blood tests and 2 biopsies and seen 15 doctors.  The only evidence is that I have PCOS,  slightly low estrogen and low progesterone.  My periods are not regular.  And 2 biopsies only showed non specific inflammation.  I have tried every antifungal and steroid cream under the sun, testosterone cream, estrogen cream, probiotics,  antiseptic,  you name it I've tried it. Currently on Lyrica which only helps slightly.  My symptoms are worse when I am just about to get my period (on the rare occasion that it actually comes)

I am desperate.  If anyone can offer me any form of advice please tell me. I do not know how much longer I can live like this.

Hi!

Sorry to hear about that I read your previous posts and saw that you are also from NSW Australia. The public system here is really slow, I booked an appointment with a vulva specialist and I need to wait for 4 months (worse still it's being pushed back cause I couldn't make it for that date)!

I think you will probably be more experienced than me in terms of treatment options but just wanted to ask what are you doing at the stage to manage your symptoms, other than Lyrica? I have a different issue, mine is mainly pain on touch and I've been trying to do anti-inflammatory stuff to cool things down. Has any doctor ever discussed with you about the possible cause of your symptoms? It sounds like hormone related.

Thanks for your reply,  so glad to see I'm not alone in NSW. I'd love to hear your story, thought I was the only one in the state dealing with this.  

 It is a ridiculous system....freaking crazy....and the doctors have been utterly incompetent up until this point. My current doctor believes it is either hormones or nerves. The fact that it gets worse in the 2nd half of my cycle and eases off with my period suggests hormones. No other treatment ATM...saw a naturopath for a few months which helped a little with following a diet but my itching and burning was not going away and it was costing me my entire wage per session. It helped with my other symptoms such as hot flushes and hair falling out. But apparently nerve endings change with menstruation too. See I was meant to have surgery today to check for and remove endometriosis if I had it and treat any vulvodynia causes too. See endometriosis grows on estrogen so it is not safe for me to have any HRT until endometriosis is ruled out. So this op not happening for me today is a massive kick in the vag so to speak. So now I am stuck another 7 weeks before I have any chance of surgery. And suffering like crazy in the meantime.

Which Vulva specialist are you seeing? I saw one in Sydney, lets just call her DR.F,who claimed to be one of the best in Australia but was an absolute rude and had no compassion whatsoever.  And all she does is insist on steroid cream...which I had tried in all forms and made me worse. When I contacted her to say the treatment failed she told me I needed councilling and antidepressants.

You are definitely not alone! I believe there are many others who also suffer from this condition, or else there won't be vulvar clinics around in Sydney (surely it's an industry that can make money). Mine started with a treatment to a yeast infection that was positive at that time. I believe it is the treatment, not the yeast infection that has caused my pain. It was probably after using a feminine douche (for the first time) and a possible tissue trauma for over-using it (which was super painful). Sounds stupid but I really thin this is the case! Ever since then my area is over-sensitive and pain to touch.

Ya I guess pain is definitely nerve related, something is making our nerves overly sensitive Do you mainly get burning and itch? I heard from a few others that baking soda bath/douche helps with itch.
Did you have any hormone related issues before the pain? Logically if it's a hormone related thing then bringing the hormones back to normal balance should help? My friends who had menstrual problems took TCM and their cycle slowly went back to regular. Not sure if this will help with the itchiness and burning sensation but maybe remedies to bring your cycle back to normal might help. I was considering about seeing a naturopath too after seeing stories of people being cured from eating herbs or pills made by naturopaths! But I guess it won't work for everyone

I see.... That sucks really and I guess private will cost tons of money. I had appointments with a private gynae before and each follow up consultation is $100 + whatever additional examination fee. He suggested to do a biopsy for me if my condition didn't improve on natural healing so I decided not to see him again cause I know the biopsy will cost lots.
I know it feels horrible to wait esp when the anticipation was high (can't believe they can cancel on you so last minute!), but since you have already waited for so long, in just another 7 weeks you might be able to find hope again

I've booked an appointment with Dr B, and I think I know which doctor you are referring to! She has this joint vulvar clinic thing with Dr B right? Someone on this forum mentioned she's really good though. I've read an article by her saying that how 80/90% of women coming to her clinic with vulvar problems are having skin problems & how corticosteroids should be used (for at least a month) to ease the problem. I guess that's why she believes so much in that stuff, but people with nerve irritation problems can't be cured with sth for skin problem. Anti-depressants do work for nerve problems but I'm really scared of the side effects

Yes you guessed right! I wish I saw Dr.B instead of Dr.F, apparently she is the much better one of the two, but I did not know that at the time and I had no idea my hormones were so messed up. I questioned Dr.F about my hormones and she totally dismissed it. Let me know how you go with Dr. B!

My current doctor found my hormone problem by doing a blood test every week for a month and found that my levels did not fluctuate throughout the month, they just flat lined and did not change at all. I usually get a period once every 2-3 months. A blood test and ultrasound confirmed the PCOS. But usually PCOS is caused by insulin resistance. My insulin is fine. But he can't do much more for me til I have this surgery

The Naturopath gave me stuff that did help me get my periods, but did nothing for the itch and burn. She said it would take time, a minimum of 3 months to kick in but she couldn't give me something to help with my low estrogen anyway because of the possibility of endo.

YES I thought I had thrush at the start too. I used thrush treatments and it did not work. I think all the things I tried just made it worse.

Baking soda baths do help a little bit when it is bad. My symptoms are mainly crazy itch, soreness and rawness, burning vestibule area leading up to my period and throbbing vestibule pain that comes and goes. The itch is all over.

I am praying it is not nerves and that it is hormones because nerves are so hard to treat. It is so scary. I even got treated with Diflucan thrush tablets for 6 weeks as they thought I might have a deep thrush infection but it did not work and the Diflucan really upset my stomach as I have gastritis.

I think probably because she is a dermatologist so she's only "specialised" in her own field. My appointment with Dr B is in ages, it's supposed to be on end of next month but I will be overseas by then so it got postponed to August I'm really hoping someone will cancel and my appointment can get pushed forward.

At least your current Dr found something (is he a specialist?)! Have you wondered why your hormone is not balanced? Could it be due to the pill?
Sometimes I feel like our body is so complex and so many things can go wrong When I look at some girls I can't stop but feel envious that they can have a good healthy body, I really wish I can get mine back

Hmmmm how's your period atm? I thought bringing period back will help with hormone regulation but I guess there's more to the hormone stuff.

I think it's kind of like both nerves and hormones. Nerves as in not nerve damage (I think for nerve damage it usually accompanies pins and needles, numbness etc), but overly sensitive or stimulated nerves. In your case it might be hormones, your nerves signalling the sensation of itch might be overly stimulated or irritated. For other people it can be other inflammatory substances that irritates their nerves & increase the pain signalling to the brain. That's why I hope by calming the nerves down we will feel less pain/itch, but sadly that's not easy

Does that mean you never got tested positive for yeast infection?

Never tested positive for any form of yeast or infection. Only a biopsy with non specific inflammation. Duh...As if I didn't know I am already inflammed!

I went on the pill when I was 17 before I was sexually active because my periods were so excruciating and heavy. Then I stayed on it for 8 years and as soon as I came off it this all started. Irregular periods, then this vulvodynia followed, hfollowed by extreme fatigue, nausea and vomiting every single day....up until August last year it was literally like I had 24 / 7 morning sickness, I would literally open my eyes in the morning and have to run for the toilet bowl to puke and I was like that all day every day, got hospitalized so many times I cannot remember, I was literally on a friendly basis with all the nurses as I was in hospital so often. My hair started falling out of my underarms and pubes...This took a while to pick up on as I don't let hair grow down there or under my arms. I was getting extreme hot flushes and night sweats. I am nowhere near as bad as what I was but I was so sick I lost so much weight people were asking my mum and husband if I had an eating disorder. I am only a small frame so I looked really really I'll, I looked like a walking zombie. All the doctors wanted to do was put me on antidepressants and say it was all in my head and that I needed councilling.

It is funny, I had over 50 blood tests done and Noone picked up that I had low hormone production.

I saw my current doctor at the end of August and that's when I started getting some answers. I had to do so so many tests, including heavy metals, and 2 months worth of hormone tests to be sure that my hormones were constantly malfunctioning. And then being on the waiting list for so long to have surgery is just what has stalled things. He can't attempt to fix my hormones until he knows exactly what is going on inside. I am now booked for surgery at the end of June. The hospital just called me today.

Can I ask how long you have had this for exactly, what tests you have had done and have you seen any other specialists? And how old are you? If you have no luck with Dr.B I can always give you my doctors info. Yes he is a specialist

Think they just wanted to rule out any possibility of serious pathology but still... i agree with you haha! that's why i'm not keen on doing biopsy with the doctor cause i think i know my body and it'll probably show as non-specific inflammation.

Wow that was horrible! I didn't know coming off the pill can have such a big impact! I thought many people developed vulvodynia because they were on pill for a while, but I guess whether you are on or not the pills mess up your hormone balance and that can affect the nerves
Those incompetent doctors are seriously so annoying. They think they know everything but just give crap advice and show no empathy.

I'm so glad you have found a good doctor! I guess the demand is more than supply so if we want to save $ in the public sector we have to wait. It sucks cause it means we need to suffer longer At least your next operation is confirmed, really hope you can get an answer from it

I had the vulvodynia like pain for 3 months alr, though the mess with infection started earlier. I never had any health issues before (I was so lucky), so this thing really freaked me out. I am still worried but am coping better I think I have only done swab test after the pain and it came negative. The specialist I went to gave me very potent steroid cream to use and tbh it helped a little bit not much with the pain, so he asked to me to wait for a while to see if natural recovery occurs, or else he'll do a biopsy for me. But I am skeptical about natural recovery cause my symptoms has been the same for 3 months and IF natural recovery occurs then I should feel better for a bit at least? That's why I decided to take supplements and do some home remedies to see if it works. A post by another girl who had similar symptoms as mine did the home remedies and got rid of the pain so that's where I got the info from
I was planning to ask for tests on heavy metals or vitamin deficiency, but my pain seemed to have decreased after I started taking calcium plus supplement (with calcium citrate, magnesium oxide and vitamin D) recently, so I decided to monitor the progress first. Unfortunately after I took it I started to develop other prob (mainly bloating and rectal pressure/pain) so I have to stop it for a while to see if my new prob goes away I'm 23 this year

Thanks so much I might really need your help if Dr B didn't work. Are those specialists also in the public sector? I know there is this clinic called Women's Health & Research Institute that has Dr, physio and acupuncturist & some members here mentioned that it's quite good. But it's private so it'll be expensive to see them, & I know that a few consultation probably won't resolve this issue.

My doctor cost $230 the first appointment I had, and it was a 2 hour consultation! I got $70 or $90 back from Medicare and after the first consult I pay $142 I think and I get some back from Medicare too.

It is so so expensive it's ridiculous. Especially when you don't get instant answers! And especially if you have to travel. I travelled 6 hours to see Dr. F and 3 hours to see another doctor...Both with no answers. My current doctor is only an hour n 20 mins away now so it's great. It's hard living in a small town with no specialists. Hope you don't have to travel too far to see Dr.B.

It's hard with vulvodynia as there is so many different things it could be but doctors just don't want to take the time to help their patients.

Ya my private gynae too! and I don't have medicare cause I'm an international student all out of my own pocket

6h for Dr F! that's so long! you must be so frustrated when you didn't get anything out from that. It's good that you have found a good doctor who's close to your place or else it'll so much of a hassle to travel all the way down to see a specialist.
I think i'll need to travel 1hour more slightly more than that to see Dr B. I'm lucky cause I live in the city so all the specialists aren't too far but it's the waiting time to get an appointment that's very long!

Vulvodynia is a difficult thing to deal and I think many doctors can't be bothered to use their brain that much cause many of them are used to the routine medicines. and everyone's case is diff so they don't really get a reference case for ideas. I think finding the right specialist is winning half the battle, so you are almost there