Update: Still Struggling...

Hi Everyone... Sorry that I haven't posted in a while. Anyway... although things have MUCH improved like I mentioned in my last post, I am still not 100% of the way there. I find that I have good days and bad days and I haven't quite figured out what causes them. I did find out that I have a lot of food sensitivities and that I need to take care of by doing an elimination diet. Your diet can affect vestibulitis so I recommend that everyone pay attention to what they eat and see if you notice any foods causing even a slight digestive upset.

I have been having a lot of luck with the lidocaine gel and I am continuing to use that almost every time before sex. I also bought some latex gloves and have been manually stretching out the vaginal opening on a weekly basis (I wish I could get up the motivation to do this daily because I think it makes a big diference).

I wanted to recommend a book to everyone because I've been getting a lot of questions lately via email and I think this book will help.

http://www.amazon.com/Ending-Female-Pain-Self-Help-Suffering/dp/1439257779/ref=sr_1_1?ie=UTF8&qid=1354831897&sr=8-1&keywords=vestibulitis

Addressing the Muscle Pain with Vulvar Vestibulitis

So I've been going to the physical therapist 2x a week for a few weeks now and I have noticed some improvement. I am now 98% pain free with the Q-tip test! Very exciting! And now I am moving on to continue addressing the muscle pain that I've been struggling with. I never realized that muscle pain causes burning the same way that the vestibulitis does. Now that the vestibule tissue is healed and practically pain free I can really identify the location of the muscle pain and it's just inside the vestibule area. The muscles feel so tight during PT and I can tell it is going to take a while to relax them and stretch out.  I try to use the dilators every other day and I am hoping to notice a difference in the next few weeks. If not, my next plan of action is botox which I have heard some women have had success with. The problem with that is you need to get injections every 4 months so I'd rather stick with PT and address the source of the problem. More updates soon! Thanks for reading!

Physical Therapy Update for Vestibulodynia

So I started physical therapy in week 8 and it was really encouraging. I was about 70-80% better with the q-tip test and my PT said this is totally normal because it should take 3 months to full heal. After she palpated the area I recognized some internal pain that I had not really felt before because it was masked by the much more sensitive external area before surgery. I felt a burning sensation and some pain in response to pressure. She told me that this is what muscle pain in this area feels like. It manifests itself as tightness but also burning in some situations too.

I used the sensor to test my muscles ability to contract and relax and did fairly well (much better than when I first went last spring). I bought a small+ dilator to start and am going to work my way up to a larger one.  You start by putting lubricant on the dilator (I found surgilube worked really well because is doesn't burn at all) and insert it into the vagina past where it starts to hurt and so that you feel a slight stretching or burning and leave it in for 10 minutes (I suggest using a pillow and a towel to keep it in so you don't have to hold it.) Then just relax your muscles and read a magazine or watch tv while you sit there with it inside. I am trying to do this 3-4 times a week in between my PT appointments which are once or twice a week.

6 to 8 Weeks Post Vulvar Vestibulectomy

It has now been almost 8 weeks since surgery. I had my 6 week check up about 10 days ago and everything is looking good. The 6 o clock area is still not full healed so my doctor told me to hold off on any stimulation to the area so I don't aggravate it. This means no sex... although the doctor did say oral sex was okay just nothing internal.  I don't have another scheduled appointment with my obgyn so now it's just a waiting game. I've been putting some calendula oil and aloe on the area to aid in healing. I don't have any discomfort doing normal every day activities. I do still have some swelling though; I notice it more when I wear tight pants and it is kind of like a bump on the outer labia that goes away after a while. I still soak in a sitz bath maybe once a week. I have an appointment with my pelvic floor physical therapist next week so hopefully that goes well. I'm a little nervous that the surgery hasn't full fixed my issue. I haven't been able to truly test the tenderness of the area yet but I will update again soon.

Thanks for reading as always!

Vestibulitis: Things I've Tried and Some Great Resources

Now that I am waiting to see if I am "cured" after having a vulvar vestibulectomy, I figured I'd work backwards and share my experiences with past treatments that I have tried. Obviously nothing has really had any lasting or overly positive impact or I would not be in this position today. But, since vestibulodynia can be different for everyone, I thought some of you reading this blog might get some new ideas if you are feeling like you've hit a wall and your only option is surgery.

Subscribe to my blog to follow my story...

I will be posting about the different treatments I've tried every week until I've told you about them all. By that time hopefully I will have a success story to share with you too!

For now here are some great resources:

His and Her Health on Vulvar Vestibulectomys
This is a great forum that I recently found. It does have a lot of negative comments from people who have had vulvar vestibulectomys that didn't help them or made their condition worse but it is important to remember that some surgeries are much more invasive then others (even though they have the same name) and some of the people with this condition also have issues like prudential neuralgia or fibromyalgia that can make things much worse. Always do your research before getting surgery and as your doctor to describe the surgery to you in detail as well as talk about the experience he or she has had with this surgery in the past. It is also important to make sure you don't have an underlying condition that could be causing this issue because in that case, surgery might not be the best option.

VulvarVestibulitisRelief.com
Sign up for this site and create a case study to share your story. You can look at other case studies to get ideas for new treatment options or just read some of the articles that are posted there for more information.

MTV True Life: I Can't Have Sex
This is a video MTV did a while ago that just shows that this condition (or ones like it; ie. vaginismus) are more common than you think!

More resources and information soon!

Why Me?

That is what I asked myself when I was finally diagnosed with Vulvar Vestibulitis about 3 years ago. I had been to 4 different doctors before getting a diagnosis and every since then, it has been an uphill battle (still far from being won). I found out something was wrong ‘down there’ when I had sex for the first time at age 17. The first time was painful, but it is for everyone, right? The only difference is for me, it didn’t get better; in fact it got worse as time went on once the psychological effects of associating sex with pain set in. Anyway, more about this later. For now I just want to give an introduction to my condition and share my story with other suffering from the same thing.

What I’ve Tried (in order for the most part):

- Amitriptolene
- Topical Lidocaine
- Premarin Estrogen cream
- Pelvic Floor Physical Therapy
- Topical Gabapentin
- Cotten sanitary pads
- Natural soap and shampoos
- Estrogen/Projesterone cream
- Estrogen/Testosterone cream
- Sea Berry Buckthorn Oil
- Calendula cream
- Calcium Citrate supplement
- Chiropractic
- Accupuncture (Just started)
- Surgery (scheduled for the end of December!)

Hopefully I didn’t forget anything… Obviously I haven’t had much luck since I have surgery scheduled for the end of the month. Feel free to comment with any questions or suggestions. I would love your input! I will work backwards in this blog and tell my story from the beginning while keeping you updated on my current progress. If you have any specific topics you want me to write about let me know!