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

Updates Post Vulvar Vestibulectomy Surgery 6 months

Hi Everyone! Sorry it's been so long since I have posted anything. I continued physical therapy until the end of April and since then have been too busy to continue. I now do some stretching exercises a few times a week using a latex glove and a little lidocaine gently stretching the vaginal opening. Sometimes sex is 90% or more painless!!! This is great! The new lidocaine gel prescription seems to be working much better than the old variety I was using. The best (most pain free)  time of the month seems to be a week after my period ends up until a week before it begins. After that it seems to be more painful and I'm not sure if that has to do with changing hormones or levels or discharge. I always put lidocaine on the irritated area at least 5 minutes before intercourse and I will just keep doing what I'm doing for now.  After another month or two of really pin pointing the days when I have the most pain during intercourse, I will bring it up with my obgyn at my annual. I am fully healed from surgery and there is no noticeable difference in the area. I also am staying away from birth control pills for now and have only been using condoms which works well for the time being.

Sorry I have not been responding to comments... I set it up so I am supposed to receive emails every time someone posts but it seems many of them are ending up in my spam folder. Thanks for reading and I will update as soon as anything changes.

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!

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!

Physical Therapy for Vulvar Vestibulitis

I started physical therapy for my vulvar vestibulitis about a year ago. This was one of the first things my 3rd obgyn had recommended to me. I got a good recommendation from her about a PT that has worked with patients like me frequently. I had to buy a special sensor that goes into the vaginal opening and measures how well your pelvic muscles tighten and relax. You lay on a comfortable table (like at the doctors) and flex and relax your pelvic muscles on command (basically doing kegels). Your muscle movements are tracked on a computer monitor which you can view afterwards. Then my PT worked on massaging the pelvic muscles both interior and exterior. My muscles were clearly very tight from guarding. Because sex was so painful, those muscles would tighten even thinking about it. I also learned about several different stretches that help my muscles relax. I went 2x a week for about 6 weeks and showed great success in my measured results with the sensor. I learned how to control my pelvic floor muscles and most importantly how to relax them to reduce pain. The only downfall was that I saw no difference in the pain I experienced during intercourse. I stopped going at the beginning of last summer but I plan to go again in two more weeks when I should be 95% recovered from surgery.

Vulvar Vestibulitis: Another Post Surgery Update

So... It's notw been around 3 weeks since my vulvar vestibulectomy surgery. I had my two week post op checkup and she said everything is looking good. She pulled at the skin 'down there' to get a better look at things which was a little painful but she said that was to be expected.

I also have still been experiencing back pain since surgery (although I think it's been getting steadily better). I called anesthesia at the hospital I went to and they said that most likely I have a bone bruise. This means that when they were putting the needle into my back for the spinal anesthesia, it must have hit the bone causing some bruising that should get better within 3 months... I was not happy about this at all. Granted it is just a little painful now, it is still quite inconvenient. I have my 2nd post op this friday and I will update again after that. Everything is back to normal for the most part. I am still doing sitz baths at least once a day and I feel the same now as I did before surgery (except for my back). I still haven't played any sports that require a lot of running or lounging as my Dr. told me to keep taking it easy in that respect.  I am looking forward to my appointment and please use the comments box below to ask me any questions...

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!

Getting ready for my Vulvar Vestibulectomy

Tomorrow is the big day. I am really nervous for the surgery itself and even more nervous that I'll do something to screw up the recovery. I haven't taken any medicine or vitamins all week and im going to clean my entire house this evening so that I can rest easy. I want to go to bed early so I'm well rested but I also want to eat t 11:30 pm because that's the last time I'll have a chance until tomorrow around 2pm. I usually get naucious when I don't eat but I'm hoping that's not the case tomorrow. My boyfriend will be at the hospital with me the entire time and I'm so glad he's there although he's only allowed to see me for 10 minutes during the 2 hours I sit in a recovery room directly after surgery. I bought a sitz bath and a big round doughnut pillow to use when I have to sit down. I'll post again tomorrow night after I get home or Saturday. Wish me luck!

Pre-op appointment today - part 1

Today was my Pre-operation appointment with my obgyn to discuss all the surgery details. The surgery is called a vulvar vestibulectomy and involved removing the painful skin tissue and a little bit of the area surrounding it. My doctor used a qtip to touch the sensitive area to determine what area needed to be removed. For me, it consists of the area 2pm to 8pm of the vestibule area. The vestibular glands will not be removed. Although my obgyn has only done 5-8 of this specific surgery (with all success) she is a very highly demanded surgeon at the hospital which I am going to. She says that she considers this a minor surgery with minimal risks but that all surgeries have some level of risk regardless. In my next post (hopefully tomorrow) I'll go into detail about the surgery protocol and the estimated recovery time.

Comments and questions welcome!

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!