My Story...in desperate need of help

Hi ladies,

I joined this forum out of desperation in hope that someone may be able to offer advice. I am also here to offer support to others, because lets face it, noone really knows how this issue affects your life and makes you feel until you experience it first hand. HELL is the only word to describe it.

I'm an Australian girl in her mid 20's.

A little over a year ago I developed an inflamed, very itchy , sometimes  burning vulva. I automatically assumed it was thrush so I used canesten and took a difucan but it didn't work. I went to a GP who swab tested me but it came back all clear. She gave me Doxycycline and Metronidazole but that did nothing.

Prior to this I did 3 things differently.  I came off the pill,  I had laser hair removal (but the inflammation is not where the laser had been), and I used a sample of feminine wash.

I saw another GP who gave me Betamethasone steroid cream and said I had had an allergic reaction to condoms. The Betamethasone did offer about 3 days relief but then it just made me worse.

I  also developed extreme nausea and uncontrollable vomiting,  fatigue on an everyday basis.

I tried everything over the counter in the meantime...zinc oxide,  Probiotics,  antiseptics,  any cream you can think of.

Saw another GP who sent me to a Gynocological Oncologist to rule out vulva cancer. At this point I was sh*tting my gear as I didn't even know such a thing existed! Lucky he said I definitely don't have vulva cancer. He gave me Diprosone which did not work but make me more red and sore. He tested me for the same old things, as well as auto-immune diseases.  He did a biopsy which showed nothing.

blood tests show normal hormones.

In the meantime I got food and chemical allergy tested. I tried Erythromycin antibiotics,  Ovestin cream for a week,  Ekocon steroid cream.....the list goes on.

Saw a dermatologist who put me on Diflucan for 6 weeks which made me  very ill.

Still vomiting and nauseous every day. GP tried me on Nexium 40mg which did nothing. Im like it from the moment I wake up, like morning sickness every day.

GP tells me to consider antidepressants,  go home and shag my husband and forget about it. He said to look for help elsewhere. Needless to say, I dont go back.

I see a Vulva Dermatologist who says only to use 1% hydrocortisone ointment and that I should consider councilling and antidepressants.

Use 1% hydrocortisone for 3 months. Does nothing. I contact the specialist who says I need councilling and dismisses me.

My New GP raises his eyebrows and says "Councilling?  Councilling wont fix the problem!".

My new GP is concerned about my vomiting and nausea. I see a neurologist who does MRI's and other tests. I even get a Spinal fluid test which was as horrific as it sounds. All tests show nothing.

I get booked in for an endoscopy.. a year wait! And the doctor laughs at me and says its a waste of time despite the fact I am almost vomiting and passing out in his office.

Ultrasounds on stomach and pelvis show nothing.

My periods are all over the place. 47 days in between each other, 66 days inbetween ect.

Leading up to and during my period my symptoms seen to worsen, especially if I do not get my period.

I get a second biopsy. This one shows non-specific inflammation.  No sh*t I have inflammation!

I am finally going to see a proper Gyno in a few weeks. I am going crazy. All I do is cry. It affects every aspect of my life. My marriage, though I am lucky to have an amazing husband who is very supportive (and he has serious health issues of his own), I don't go out, I have to take time off work for doctors and because I get so sick.

I need all the help I can get! Any advice would be much appreciated. Xo

So,so sorry to hear about all your problems. I don't have any advice for you except that I know how you feel about this affecting your whole life. I don't go out, I avoid my friends, I cry all the time, I deal with incompetent doctors, etc. I hope your new doctor will give you all the answers you need. One day at a time is all you can do. Hang in there.

Thankyou,

Yes the emotional trauma is ridiculous. No-one should ever have to go through this

You are right about the doctors being totally incompetent. I think to myself "They can cure some cancers but they can't cure this??". They do not take the issue seriously, they do not care at all. They just put this matter in the "too hard basket" and dismiss it, which is complete lack of duty of care if you ask me, especially given how debilitating this problem is.

The craziest part is reading how many other poor unfortunate women are in the same/ similar situation.

Thankyou for taking the time to read my story. I would love to know yours seeing as you took the time out to acknowledge me. X

Well, my story started about 6 months ago when I was treated for chronic BV back to back with Metrogel and Flagyl. I started then to feel a constant ache on the outside of my vagina. It started to get worse when I got a lump down there. It was a Bartholin Cyst that was lanced and drained and sutured. I was glad there was a reason for my achiness. But once that was all healed up, I still had the pain and it was getting worse. After multiple appointments and a pelvic CT scan, I researched for answers myself. I found out about Vulvodynia and brought all my info to the Gyno. He looked at it and said, "you don't have this, this happens to women in their 20's. In my research, I had not found this to be true. He sent me on my way. Two weeks later, after some very, very dark days and literally losing 12 pounds, I begged for another appt. He saw me again and after many questions about my marriage, and if I was just afraid of sex (I have been married 18 years!), he did a q-tip test, told me I had vulvar vestibulitis, told me he would prescribe Gabapentin and to come back in 3weeks and walked out of the room!! He didn't explain to me the diagnosis or the treatment. So, the meds initially helped with my depression and lack of appetite, but not so much the pain. My pain level is still at about a 7 all day every day. We upped the meds on Thursday and so far still no better. Our insurance is through the Army which really sucks, but I somehow got an appointment with another Gyno next Tuesday. All my prayers are for this doctor to be better and know more and help me! No one should ever have to go through this emotional disease. I have found some really good women through this sight which has helped a lot. I hope you find the same. Feel free to IM me, or my email is caropes32@hotmail.com

Sorry, it seems like I have written a book keep me updated with your progress.
-Cathy

Oh I'm so glad you are going to see another gyno, that guy sounds like an absolute pig! That's disgusting. I can't believe that he did not inform you whatsoever. Just another arrogant a**hole who wants to take your money and leave you high and dry. Every time that happens, or when you try something new and it doesn't work, it's like a big kick in the guts every time (or in this case, a big kick in the vag!)

Please let me know how you go. I will have my fingers crossed for you!

Lol, I think most people's stories on here are like reading books....because we have been dealing with this crap for so long.

Where abouts in the world do you live? Here in Australia the health system is ridiculously poor. Especially in smaller towns like where I'm from. It takes a year to get into a Gyno in my area. The only way to get into one sooner is to travel (yet another expense).

Hi there I am from Melbourne, just wondering where you are from in aus. I could help you out with a great specialist.

Thankyou for your response. I am in New South Wales. I went and saw a Vulva Dermatologist in Sydney who did nothing for me. I have heard there is a great vulva clinic in Melbourne.

If I have to travel I will. What's your story? X

I live in the U.S. In Alabama. I tracked down a specialist 3 1/2 hrs away but he was booked until next year!! I am on a waiting list for him  

Oh jeez, sounds like the health system over there is jyst as bad as Australia! I feel like just booking into 5 different ones all at once!

I think half the women on this forum have more knowledge than the dopey doctors!

Ya, I am hoping eventually some dr somewhere will be able to help?!

Caropes, I live in Ga. Is your Dr. by any chance over here? I am so desperate for someone who knows how to help us. Mine is muscle/nerve involvement I am pretty sure. It's connected to straining with bowel movements and constant constipation along with what I think is IS. I keep telling these Dr.s about peeing all the time no one seems to catch on.
I found another PT over an hour away that I am supposed to see in August. The first one just didn't seem to help and made me feel that she was at a a dead end, although she is mentioned on the vulvodynia website.
Found out that my thyroid is off and started on Levothyroxin a little over a month ago. Someone mentioned having their thyroid checked. Does anyone know anything about a connection with the thyroid and this stuff.
Anyway, I'm 67, post menapausal and was still having a sex life until two years ago.
I have lost my friends, all my fault and most of you understand why. My husband and I are getting further and further apart and the love of my life, horse back riding has been taken away to name of few of my changes because of this horrid curse.
I'm even finding myself losing my faith. I just feel so alone except for this website. Don't know what I would do without knowing that others understand.
Dr. who gave me the referrel to the next PT of course wants to put me on anti depressants but I just can't go there again. They make me even more constipated along with all the other weird stuff.
My gyn, not the dr. above, is at a loss, wants me to go to a neurologist because she doesn't prescribe lyrica which is the only other thing she knows to try.
Really sad when the patients know more than the Dr.
I still say if this thing happened to men, if they had a problem that feels like acid on their penis there would be a cure for it by now.

I typed IS I meant IC, innerstitial cystitis.

Hi Meelie I so feel for you. You sound so exhausted and at wits end. After reading about you I can only suggest lyrica. It doesn't cause constipation like anti depressants and I find if I buy mix of constipation tablets and mix them up so say 3 of each it keeps me regular. I am 42 pre menopause and my life has changed forever from this curse. But keep trying and reach out to support groups of any type just so you can meet other people. Depression or anxiety support groups are great because people attend those with all kinds of problems. Your loneliness is common with vulvodynia sufferers because we can't talk about well and if we do people just don't understand. Keep trying and search out some counselling. Kind Regards Z

Meelie, when I joined the NVA they sent me doctors names for my surrounding area. These are doctors who are members of the NVA (national vulvar assoc)

Howard Reisman
Atl N Gyn
Roswell GA
770-992-2691

Ramon Suarez
Piedmont Hosp
Atl GA
404-352-3656

James Bendell
The Women's Center
Lagrange GA
706-845-0500

I hope this helps!! Please let me know. - Cathy

Thanks Cathy. I guess your Dr must be in Ala.
These are so far away from me, but I will look into them and see what I can find.
How are you doing?

Hey Meelie, the specialist I am going to see is in Birmingham AL. It is four hours away and I couldn't get an appointment until mid December. I am currently on 1800mg/day of Gabapentin and 50mg of Amitrityline. My pain level is a 4-5 most days. Good enough to get through each day I guess. I am waiting to see if I am approved through insurance to see a PT who is 90 minutes away. Not sure it will do anything, but I am willing to try anything!!

How have you been? I think of you often and still pray for all of us suffering this horrible condition!! Let me know if you have any luck with the doctors.