Vulvodynia & Vestibulitis
Helping Each Other
A New Vulvodynia and Vestibulitis Support Group
Welcome
to OUR page ladies!
I am a three year sufferer of VULVODYNIA, though much better at this time, knowing a flare up is possible at any time. I shall post my full story to show my VV woes. I have formed a support group here in South Florida and though it has been very interesting and helpful to us all, we all agreed that such a page as this, will be even more helpful. There are many pages for VV and Vestibulitis, but none are simplified and quick for just plain talk. SO………….. This is a page only for communicating and helping each other cope and learn new ways (or old) to make us feel better. Not to cure, because this is only communicating with fellow sufferers. So, please keep that in mind when reading or writing on this page. Please only give first name, state, country and e-mail addres (which will not show on your post). Do not give telephone numbers, or home address, since it is an open page. I shall personally check the posts and if there is any unfortunate or harmful message posted, I must delete it. If you give the state/country you live in we can try to match you to someone in your neighborhood, for a possible support group. Please be informative and ask all the questions you still might have. If you have a doctor or therapist that you have found that can help you with Vulvodynia/Vestibulitis, please post explaining where this person is and how you found him/her to help you. Other ladies in your area then will have a possibility to share in your good fortune. We shall place it in the Doctor Referral page as soon as possible.
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Posts 1 to 10 of 911
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| Sharon | Tx | U.S.A | 2008-05-08 16:28:23 |
For those with vestibulitis: my physical therapist recently recommended trying antihistimines to someone I met via the internet. She said 48 hours after trying them she had amazing relief. I thought I would pass this on. |
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| alina | Europe | Romania | 2008-05-08 05:21:51 |
Magenta, in dr Rapaport's articles all patients had to go through several flares until they completely cleared. Several treatments were applied to ease the flare periods: PUVA, Gabapentin, cyclosporin. I can send you the articles by mail if you like. |
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| Magenta | NY | USA | 2008-05-06 15:27:58 |
Katie: Glad to hear about the Spongy Wonder! Alina:I have had the same issue too with hair in the area, I actually have to remove it. I know this might sound crazy like it would cause more irritation or be painful, but the hair comes out very easily (I suspect because the skin is damaged, it also is slow to grow back, whereas elsewhere on the body this is not the case). It is itchy coming back, but when it is present it causes even more irritation. Did Dr. Rapaport say if the women who had rebound irritation from using the topical steroids were able to find anything else that eased the dermatitis when they discontinued them? I had one dermatologist who brought up the idea that steroids may have exacerbated the chronic dermatitis, but unfortunately he couldn't give me anything else that actually gave relief. If I just use nothing at all, it is almost guaranteed that within a week I will be itching so badly that even my sleep is ruined (this one spot at the top of the vulva has been a constant problem for the past 2 decades!)and that it flares in areas into a rash which becomes so painful in places that it hurts to go the bathroom. This is regardless of how careful I am to keep potential irritants away. It is so frustrating and confusing, I have reservations about steroids myself, but then I have also been told that is the only treatment for some types of skin conditions which I have. I just ordered some Gotu Kola in olive oil which is supposed to heal skin fissure, am hoping for some luck there. |
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| sharon | Texas | USA | 2008-05-05 17:28:27 |
Cynthia,
Were you not able to see Kimberlee at Sullivan Physical Therapy? I really hope you can. I referred a 17 year old to Kimberlee and her mom just emailed me to tell me how much they love her.
I'm sorry, but your doctor doesn't know what she is talking about. You could have vulvodynia, vestibulitis, vaginismus, or problems with your levator ani muscle. I think there is an answer to this, but if your doctor can't diagnose it, you have the wrong doctor.
Don't use anything on yourself that makes you feel worse.
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| alina | Europe | Romania | 2008-05-05 05:44:29 |
Hi Hanna, I work in the software industry and English is a must.
I am trying to use emu oil on my vulva in the hope it will speed up skin recovery.
I am testing it on a small area to see how it goes. I do not want to add any more irritation.
I am currently using Uriage Thermal Water to spray the skin. It has an antiinflammatory effect. I tried washing with calendula and chamomille teas but they dried the skin.
Last week I had a week off and stayed home in my extra large PJs and the aspect of the skin has improved considerably. However it is still painful when I put the underwear on.
I have switched to Dermasilk underwear (www.dermasilk.co.uk). It is soft and breathable.
However I made the mistake of trimming my pubes and now they sting when growing up.
I had two almost normal days last week when I almost felt no discomfort thanks to the Dermasilk, but now the pubes have grown and it is uncomfortable again.
I have done some research online and found some articles mentioning steroid withdrawal symptoms by Dr Marvin Rapaport (http://www.expert-reviews.com/doi/abs/10.1586/17469872.1.4.547).
He had patients diagnosed with vulvodynia and they were actually caused by steroid overuse. They had to stop using the steroids and it took more than a year for their vulvar skin to come back to normal.
I have emailed dr Rapaport and he was very kind to answer my mails and he thinks that I am also a case of steroid overuse, but that it will take some time until all my symptoms go away. However he advised to not apply anything to the vulva all this time as I might get irritated.
If anyone is interested in the articles I can email them (beware, the photos are very graphic).
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| katie | fl | usa | 2008-05-05 05:44:20 |
I have had much better luck with any topical if it is an OINTMENT, not a cream or gel. Most are available in any format, so insist on the ointment when they are prescribing to you. Also, another lady who has posted on this site has her meds custom-compounded into olive oil, which I would imagine has even less potential to irritate. Hey Magenta, I got the Spongy Wonder bike seat and it has set me free!!!! Thanks for posting about it! If any of you ladies have given up on bike riding because of perineal discomfort from the seat, this is the solution. spongywonder.com |
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| Hanna | Fl | USA | 2008-05-04 13:41:25 |
Alina, How come you write such perfect English? Yes, topical crèmes have irritated me and many others, especially steroids, you are not alone. It is unfortunate that every where in the world, this VULVODYNIA is an unknown problem, though so very many of us have it. Please come back and read back on the postings previously posted, perhaps you will find help there, I am sure you will have some answers on new postings, so do return, sorry you have our common problem. YOU ARE NOT ALONE.....................CYNTHIA, sorry that you have had the need to come to this page. it does sound a little like Vestibulitis, please read back also, to see previously posted letters, you might also see your self in them. If it occurs only when you have sex and after, it would seem to me that it is not VULVODYNIA, but Vestibulitis, as mentioned above., Do come back and I am sure you will see some of the ladies will answer you as well.
Thank you for your post.
Better days and nights to all
Hanna
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| alina | Europe | Romania | 2008-05-04 13:18:42 |
Hi,
I have vulvar skin pain from rubbing with underwear and pubes. I got my vulvar skin really sensitive after some really harsh topical treatment with ketoconazole and steroid creams. I got a really bad skin burn. It's been three months, the tissue looks much better, but I still have major discomfort from friction.
The gynecologist said it's vulvodynia because he cannot see any redness, the dermatologist says I'm irritated and wants me to use diaper rash cream. However, I'm really afraid to use anything on the area, not to make it worse.
Has anyone else had skin irritation from steroid cream, and how much did it take to clear up?
Thanks. |
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| Cynthia | Texas | USA | 2008-05-04 11:34:59 |
Yall I am so incredibly depressed. I am getting married in less than a month and my fiance and I have started having sex. It is insane burning and pain down there when we do it... it's NOT lack of lubricate. I've been to the doctor like 4 times and gotten different creams, (Premarine seems to sooth it a little but steroid cream made it worse) but it's not going away. Does this sound like vulvodynia to you???? She says she doesn't think it is, but maybe she doesn't know much about it. She actually said she doesn't know WHAT it is...not a yeast infection or STD. I'm just so upset because I want our marriage to start of good and for me to be healthy... right now it's just too painful. The usually goes away after like a day, but any intercourse is painful burning. |
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| Hanna | FL | USA | 2008-05-03 17:52:00 |
Katie, so glad that you have found some one who gives you a positive action and that it has helped you. I am sure many ladies will be glad to see this can be an option. To find the right doctor is half the battle. Keep us informed please and keep on getting better
Hanna |
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