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!

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!

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.

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.

Sitz Baths for Post Surgery...

Sooo... it only took me about a week of doing sitz baths 3 times a day to realize that they were really uncomfortable. The cheap plastic ones are so hard and I felt like the bottoms of my thighs were getting bruised! I decided to look for alternatives and so I ended up buying a Soft Sitz.

This is an inflatable sitz bath that is really inexpensive. So much more comfortable than a traditional sitz bath! Although just to warn you it doesn't have any holes in the back to let out overflowing water and it doesn't come with a plastic bag and tube. I still find that it works well though. 

If you are interested, I bought it on Amazon here. 

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!

One Week Post Surgery: Recovery and Walking

It's been just over a week since surgery and I'm doing really well. I'm so happy my period is over and I can finally go commando (recommended by my doctor) wearing comfy sweat pants when I'm around the house. This lets the area dry out to reduce the risk of infection. I'm still doing Sitz baths three times a day and using a blow dryer on low to dry the area after soaking. I have also been using the little squirt bottle the doctor gave me to rinse the area after going to the bathroom. The last few days have been totally pain free, although I haven't really had any real pain since the beginning. I can describe it more as being uncomfortable at times (or just kind of weird feeling). I've been going for walks, driving, and doing chores around the house with no issues. I still sit on a doughnut pillow when I do sit just to avoid putting any extra stress on the area. I also am really careful when bending down or getting in and out of the car so that I don't break open the stitches. The doctor said the stitches might cause a pokey feeling when I sit but I haven't really felt that. Maybe a little in the beginning when I was sitting down but not lately at all. I have my first post operation appointment this coming friday and I can't wait to tell my doctor how easy it's been. For anyone considering getting this surgery I would definitely recommend taking a week off afterwards where you can relax and let yourself heal but after that, as long as you have a doughnut pillow, things should be relatively normal. I am definitely not ready to go skiing, or biking, or even jogging necessarily, but I feel great.

Also, please remember that there are varying types of vulvar vestibulectomy's and depending on how much tissue was removed, there would be varying levels of pain. Some people have the vestibular glands removed and some do not. My particular surgery just removed the affected tissue on the surface and no glands were involved. I had the most pain at the 6pm spot of the vaginal opening but strong pain from the 2pm to the 10pm section.

More updates soon!

Day 4 Update: an unexpected pain...

Today was day 4 since my vulvar vestibulectomy. Yesterday was probably the worst day so far... I got my period and the cramps were unbearable. I took 2 ibuprofen at 8am and 2 midol at noon. This was more pain killers than I have taken for the surgery. It was also 10 times more painful, easily. I just sat in bed all day for the most part and did 3 sitz baths throughout the day.

Today was much better. The cramps were pretty much gone I just got a headache from my hormones acting up. I felt totally normal today. I still haven't really looked at the area because I'm too scared I'll tear the stitches. I also went for a walk today; going slow and taking it easy. It was nice to get out of the house and I had absolutely no pain. I used a doughnut pillow for the car ride but walking feels almost 100% normal; sometimes I feel the stitches poking into me though.

More updates soon :) comments or questions welcome.