Vestibulitis Update: 2+ Years Since My Vestibulectomy

Sorry it's been so long since my last post but I wanted to share an update. I had my vestibulectomy in January of 2012 and I have some good news :) I am consistently over 98% cured!!

I was still struggling with inconsistent painful sex... great sometimes and not so great others until this past September but now I don't remember the last time I had any pain.

Things I think contributed...

I got a mirena IUD in November and I was so worried about any sort of hormonal birth control because I think that may have been part of what caused this entire problem to begin with. But anyway, the mirena IUD greatly improved my vestibulitis.

Mirena has only progestin and no estrogen so that may be why it worked for me better than traditional birth control pills.

I think partly because I was able to have more spontaneous sex without the restrictions of putting on a condom. I also think everything stays more lubricated without the friction of latex. Highly recommended!

I haven't needed lidocaine or anything else topical in over 8 months.

The problem... while checking my strings a few weeks ago I felt something plastic and it was the end of my IUD starting to come out. I had to get it removed and I tried to have another one inserted but I cramped so bad during insertion that I pushed that IUD out too less than 30 seconds after she inserted it... I decided to give my body a break because obviously my uterus was not having it!

So now, no IUD :( But I am thinking of getting one again in a few months. Before the IUD I had really bad, crampy periods and with my mirena much better periods with virtually no cramps!

Other things that may or may not have contributed to my success...

I have been seeing a massage therapist once a month which has been fabulous! I had a back injury 5 years ago and never had it looked at because it didn't really hurt. I realize now that it has had some lasting effects from me favoring one side of my back over the other and now I'm a little crooked and my muscles are super spazzy.

Seeing a massage person has helped me relax my muscles and that has likely affected my entire pelvic floor.

Another thing, I've been gluten free for a year now and I know cutting out gluten can help a lot with reducing inflammation. I saw a doctor who did an allergy test and I was reacting to a lot of different things which just showed me that my stomach and digestive system was kind of a mess.

Going gluten free was so hard at first but now I have more energy and I feel my stomach has chilled out. This could definitely have been affecting my vestibulitis but if it did, it took a long time to really make a difference. Like I said, I haven't eaten it (at all) in a year and I started feeling better (down there) 8 months after my new diet.

Sorry for any spelling errors... I get these posts out quickly and don't really re-read. Hope this helps!

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

I CAN FINALLY ENJOY SEX! 8 months post vulvar vestibulectomy update surgery

Just another update... and a good one at that :)

I'm feeling really confident that my vestibulodynia is is 98% gone!!! This is big news since I have been suffering with this for over 4 years... since I was 17! I have no idea what caused it because I experienced pain ever since my first sexual experience. It could have been birth control, it could have been excessive nerve endings, it could have been an injury... Actually after thinking about this a lot I realized there is a good chance it could have been the result of an injury I had the summer before I started having sex. I slipped and fell on my right hip and fractured a lower vertebrae. I didn't find out about this until 3 years later when I finally got an xray at the chiropractor because I didn't feel any unusual pain up until that point and the fall didn't seem that bad. This could have irritated up my nerve endings and caused lingering pain and muscle tightness in the pelvic floor. Either way... I don't need to worry about that anymore because now I'm feeling great.

I still feel some pain when I use my finger to gently stretch out the area but once I use my lidocaine, I'm invincible! It also seems to be an area that is not bothered during intercourse.. maybe a spot that was missed when identifying the painful area before surgery and therefore was not removed. I try at least 3+ times a week to basically massage the area down there and really stretch out the tissue. I also practice flexing and relaxing my pelvic floor before bed each night to make sure that everything down there stays calm. It's amazing the difference I can feel since before physical therapy. I also think getting a full body massage can help too by just getting everything to relax. You might have pain points elsewhere on the body that are affecting your pelvic floor.

I still use lidocaine about 10 minutes before sex each time and and I will continue this until I feel confortable without it. I think a lot of this is mentally training yourself that sex feels good again and your body is healed.

Sorry for the terrible writing... most times I'm blogging on the go from my phone with little or no proof reading. Thanks for reading!

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.

Attempting Sex: Preparing for Intercourse After Vestibulectomy

Just another update. I encourage everyone to read my comment on the last post about addressing pain with physical therapy. So far it has really improved things along with recovering form surgery. I am excited to say that I had sex for the first time yesterday (since surgery) and it went really well. Still some pain with entry and a slight burning at times - but overall very good. I could really tell that my muscles were more relaxed. The area that I had removed with surgery was pain free! I just have some more internal burning that it getting better with PT. I am still going 2x a week and I am now using a size large dilator. The dilator hurts upon insertion but once it's in I feel nothing but mild stretching. Any friction with the dilator is somewhat painful though. I decided to get a size large so that I could be comfortable with something as large or maybe even a little larger than my boyfriend to make him seem smaller.

 I used a 3% lidocaine jelly that I had my pharmacist compound for me because the one that was originally prescribed for me was causing burning. I guess it was a combination of a high percentage (5%) and the base of the lidocaine cream that was causing the burning. I put about a dab about 2x the size of a pea just inside the opening (maybe 1-2 inches inside) from the 2pm to 11pm area. Then I use my figures to gently stretch open the area before intercourse. I wait about 5 minutes and I'm good to go. Make sure to use extra lube! I've found the lidocaine jelly actually works to let things slide easier. I also recommend "surgilube" which is a gentle option that my physical therapist uses. 

Comment and share your questions or experiences!

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!

4 weeks post surgery

I had my 2nd doctors appointment since my surgery last Friday and everything is going well so far. She said that all the stitches had dissolved and the incision had completely closed. There was still a little redness at the perineum (at the 6pm location) but this was normal considering I still have 2 weeks left until my last checkup. She did a q-tip test and everywhere seemed pain free except for the perineum. I am still doing sitz baths once every other day for another week or two.

I have noticed that if I wear tight jeans I have a litte more swelling and irritation. It's not really visible but I do notice the outer labia just gets slightly hardened because it has some fluid build up. Sitz baths are helping with this. I also started putting a little aloe on the area after each sitz baths.

I have now resumed full exercise and life is entirely back to normal. I am hoping the last bit of painful tissue heals soon.

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!