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!

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.

The Big Day: Vulvar Vestibulectomy

This morning I was a wreck. I woke up at 5:45am and took a shower with antibacterial soap. I also shaved "down there" because I knew it would be 6 weeks before I would get the chance again. My doctor also said that I had to keep that area dry after surgery so I though it would be easier with no hair. After my shower,  I got dressed in my pajama pants and a sweatshirt and my boyfriend and I headed to the hospital. I checked in at the main desk, filled out some paperwork, and sat in the waiting room waiting to go back to pre-op. They called my name pretty quickly and brought me back into a hospital room with curtains along wall that faced an open hallway. Nurses came in and asked me my name and birthday and checked my vitals. Everything looked good and another nurse came in to take a blood sample while someone else prepared my IV. At this point, I was all clammy from my nerves getting the best of me. I hate needles and the IV was freaking my out a little. Mostly I just started asking everyone lots of questions  and talking a little faster than normal. Once the nurses left I relaxed for a while until my obgyn (also my surgeon) came in to go through everything. She was cheery and reassured me that everything would go well.
Then, the anesthesiologist came in and discussed my options with me. I mentioned this in an earlier post but I will reiterate anyway.

Option 1: A spinal injection to numb me from the waste down (not an epidural which is what I originally thought). With this option I can choose to either be completely unconscious with medicine in my IV, somewhat conscious (going in and out) but not aware of anything going on and not retaining and memory of being in the OR, or mostly conscious with a little cocktail to stay relaxed.

Option 2: To be completely sedated with an intubation tube down my throat.

I went through the pros and cons of each and the doctor pretty much said that both have about equal risks. I personally didn't want to need assistance to breathe so I chose option 1 with moderate to heavy sedation. I didn't want to be completely unconscious but I didn't want to have any memory of the occurrence. I also asked for a little cocktail to prepare me for the spinal injection because I was nervous that would hurt. I had a spinal trauma a few years ago where I fractured a lower vertebrae but the anesthesiologist said this would not be a problem.

Then my obgyn came in one more time to make sure I was ready and a nice nurse came in to take me to the OR. There was two drugs put in my IV: one to make me more relaxed and comfortable and one to make sure I didn't have any acid reflux which I do get on occasion (and apparently is a big deal when being put under anesthesia). I asked when I would start to feel the meds and the nurse said by the time I got through the second set of double doors. I remember being wheeled in to the OR and asked to sit on the side so my back was in place for the injection. The next thing I know I'm waking up in the recovery room. The room looks exactly the same as my pre-op room and it all felt like a dream. I was completely alert and awake and I quickly checked to make sure I could move my legs. The curtains were open and one of the nurses in the hallway noticed I was waking up. She came over and asked how I was doing. I couldn't believe I didn't even remember the spinal injection or anything after that. I wasn't feeling drowsy or sick to my stomach. The nurse brought me some more warm blankets and a cup of apple juice with Motrin. My boyfriend came in and gave me a big kiss. I was so happy to see him and so happy it was all over. Surprisingly, I wasn't in a lot of pain and my vagina felt normal for the most part. Of course, I hadn't really tried to move at all yet. I asked how long I had been in recovery before I woke up and they said only 15 minutes. My boyfriend said I was in the OR for about an hour and a half.

The nurse had me go to the bathroom and collect some urine in a pan so that she could make sure everything looked normal. It worked out great because I really had to go to the bathroom after all the fluid that was pumped into my system. I was also given a little squirt bottle that I could use to rinse off after urinating that I can take home with me. Everything felt normal except I could not stop shivering even though i wasn't that cold. Eventually I relaxed and the shivering stopped. I put my coat on and sat in a wheelchair on top of a blow up doughnut pillow to keep the pressure off of my vagina. I was wheeled out to the car and headed home.

Overall a very good experience and I highly recommend the type of anesthesia I chose. I was told it leaves your system really quickly as opposed to other drugs. It also doesn't make you nauseous like laughing gas can. I haven't felt any side affects from it yet, although I was told to lookout for a headache that is sometimes caused by spinal injections which hasn't occurred yet.

As far as medications from here on out, I was prescribed Oxycodone for the pain but I decided I would only take it if I absolutely need it. I have never taken strong pain killers like that and I know they can cause constipation which is something I need to avoid because it can put tension on the area. Other than that I was told to take 2 ibuprofen every 4 hours and 2 extra strength tylenol every 4-6 hours as needed.

I've been home now since 1pm and I've been feeling great. I took a 2.5 hour nap and had some vegetable soup and a few cookies. I also took a Ducolax stool softener just in case. At around 5pm I did a Sitz bath which is such a pain. I didn't make the water warm enough and it cooled off so quickly. The water in the bag wasn't warm enough either. The little hose kept flipping up and squirting me in the thigh and making a mess. I ended up just using a cup and pouring warm water into the sitz bath as it cooled off. The seat is also unbelievable uncomfortable and I feel like I'm going to break it because it's a little small for my toilet seat. Someone needs to invent a better one because this is not going to be fun to do for 20 minutes 3x a day for the next week and 2x a day for the following month. I used a hairdryer on cool to dry the area afterwards and am using chlorine free organic cotton pads in my underwear to catch any blood.

At 7pm I took 2 ibuprophen and I think that is plenty to keep me comfortable. I don't think I have a particularly high pain tolerance but so far, no oxycodone is necessary. I haven't even needed the tylenol yet.

More updates soon!
Comments and questions are welcome - and if you are in New England and are looking for a doctor to perform this surgery you can send me an email at mylifewithvvs@gmail.com to get more information.