Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 Hello everyone, I am new here and wanted to introduce myself. I have been suffering for almost 3 years now. I was finally diagosed with adult onset Stills disease this past April, which is an auto immune disorder that attacks the joints and organs in the body. I have also been plagued with what I thought was constant uti''s and yeast infections, then I thought I was having constant herpes outbreaks. Finally, after moving home and going to see my old ob/gyn this week, he told me he is pretty sure I have vestibulitis. I had read about this before in my search for anwers. Several doctors have speculated that I have interstitial cystitis also. I saw a urologist and he did a cystoscopy and said I was fine. I typically go to the bathroom 25-30 times a day. I am now on ditropan and it helps a little but not much. I thought you had to have a bladder biopsy to diagnose IC for sure? Does anyone know if that is true? Anyway, the VV is really bad this week. I am just starting on Neurontin, for my other disease actually, and I have the premarin cream. Bought all white underwear and the special soaps. Any more tips for comfort. Sometimes I sit on an ice pack. How do you all function with this? I have applied for disability and was denied so I must appeal but I have not worked in almost 2 years. I could not sit still with this and all my joint pain too. Thanks for listening. Lynn Dudenhoeferldudette@... ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.518 / Virus Database: 316 - Release Date: 9/11/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2003 Report Share Posted November 24, 2003 Dear Hi, probably a skin problem, seems like your doc has done the right thing by taking a biopsy, I have just found out that I have eczema, (I had a biopsy done about 10 days ago) my feeling on the whole situation is that once you have a skin problem on the vulvar area you are far more susceptible to getting thrush, I have also had thrush on many occasions with major flare ups like what you are going through, all the antibiotics and antifungal meds that the docs gave me did not help, the antibiotics were off no use and the creams only made the situation far worse. I am sure you are aware that you need to avoid scented soaps, bubble baths etc as this will only irritate the area, its much better to shower than sit in a bath. So hang in there for the biopsy results and take it from there, I go back to the dermatologist today to see what she says about other options for treating eczema, the dermovate she recommended irritated my skin. I am also going to an allergy clinic next month to find out what foods trigger my flare-ups. Let me know when you get your results. Bye for now Mandy -----Original Message----- From: christine042802 Sent: 21 November 2003 10:51 To: VulvarDisorders Subject: New to Group Hi, my name is and I'm 23 years old. Last month I noticed my vulva on the left side was getting much bigger. It has now gotten so big that it hurts to walk or do anything because it rubs against my underwear. My doctor took a biopsy of a dark pigmented area last week, but I haven't gotten the results yet. The skin down there also looks very weird. It almost looks like the skin is just tearing apart at the very bottom of my vulva. I have no clue what is wrong with me. Please if anyone has heard of something like this let me know. That way I can bring it up to my doctor on Wed. Thanks, Good to meet you Please discuss all methods of treatment with your practitioner. NONE of this is to be taken as medical advice but merely opinions offered! *****END OF MESSAGE***** ------------------------------------------------- Yahoo members can click on: http://groups.yahoo.com/group/VulvarDisorders On the left side is a listing including Links and Files . If you click on those you will find much additional information posted by our members. To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner ***** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2004 Report Share Posted February 9, 2004 First of all sorry you are here, but I hope you will find help from this group. There should be posts about Depo in the archives. I think you can look it up by subject ( it still is confusing for me, LOL). About the diet and timed Calium Citrate. I have been on both for 3-4 years. I think that both helped my flare ups and pain. I also have IC. I did not do the timed Citrate at first but paid out the $250 ?? To have the tests done. I followed both pretty strictly for about a year or so and it really helped my pain. Now I'm not so strict about either but DO notice that certain foods (tomatoes, orange juice,spices) tend to put me into a flare up pretty consistantly. You can find out more about the low oxolate diet at www.vulvarpainfoundation.org . Hope this helped, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2009 Report Share Posted June 5, 2009 Welcome to the group APF! I just joined almost a week ago and the people that make up this group are so amazing. OMG PAIN BODY!!! First of all, I am not knocking you for reading it, it's just that my nada has been jamming all of those types of books intensely down everyone's throats for about 2 years now and it makes me not even want to look at them. Probably because of the ways she brings it into my life. My nada (mother with bpd) would NOT STOP TALKING about PAIN BODIES alllllllllllllllll summer last year. She told me I had a very dense pain body. (I don't in the slightest) Hearing or even reading the words pain body make me want to throw up. That's how intense she got with it. She LOVES to tell everyone how deep of a pain body each person has or talk about other people that weren't there and elaborate on how dense this one and that one's pain bodies were. uuuuuuuuugh!! Ok I'm done ranting now. Thanks for listening!! I sometimes wish she wouldn't ruin things like those books for me but she goes on and on non-stop when she gets on a bandwagon of some sorts and I totally have to block it out of my life. To answer some of your questions, my nada has been diagnosed with borderline personality disorder and dissociative disorder. She has tried to go to treatment and has been forced to go at times as well, but " she doesn't have anything wrong with her, she is perfect, everyone else has the problem " so she doesn't need treatment in her eyes. I have never heard of anyone with bpd being told that they have it and it going over well. My friend's friend just got diagnosed with it and she absolutely refuses to accept it. I know when I was little, my parents were married before I was born, then split up when I was 1 1/2 years old. They got re-married when I was 4 1/2 (GOD bless my dad) but between those three years, my nada spent a lot of time in halfway houses. Don't take on the burden of having her stay with you because there are other options. Shanon > > Hello, > I was listening to a call in radio show recently, and when I heard the psychiatrist describe BPD, I thought: That's my mother! > > I have weathered many storms in our relationship, but recently she entered a period of great instability - can't hold a job, lost her apartment, living with me, now my brother. This situation being created by her condition, I believe. And where, during times of relative stability the storms are lessened, she is now almost entirely " active " - and, of course, she sees herself only as the victim. > > Not living with her is such a relief, but I see my brother going through exactly the same patterns: believing we can help and " fix " things, but then having the situation blow up and become incredibly painful, and ultimately becoming blamed for causing the situation. > > I am in group support, which has been a great benefit to me. I also meditate and use a " loving-kindness " practice towards my mom, which helps me a lot. Also - " pain-body " , anyone? That is, I've been reading Eckhart Tolle and wonder about his theory of the pain body. > > I am working on letting go of needing to " fix " my mom, and allowing her to have her own journey. I am working on sending good thoughts her way, but also allowing myself to not call her and to bring our communications down to a minimum. > > I have a few questions: > First, does the BP in your life have a BPD diagnosis and receive treatment? If so, how did that happen? My mom has certainly had a relationship with therapy, hospitalizations, meds over the years, but she has not sought treatment recently. Has anyone been able to suggest, " Hey, I think you have BPD " and had it go over well?! > > Secondly, have any of you gotten to the point where it's either you or homelessness for your BP? If so, what did you do? My mom has already exhausted her support, and she has no money, so I don't know what will happen once my brother has had enough. I can't take her back - but she creates crisis after crisis, and I can see her creating a new crisis with my brother that would " require " me to take her in. > > Thanks for reading. I wish us all strength in working through our personal situations. > > APF > Quote Link to comment Share on other sites More sharing options...
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