5 months post op

For the most part things are still pretty much the same. Daily dilating, overall total body stretching and perineal massage a couple of times a week have allowed me to have mostly pain free sex. I think the initial pain with dilation and penetration is getting slightly better but it’s hard to tell since it hasn't been too bad at all since the surgery.

I've been using the Axiron every other day which greatly reduced my headaches, nausea and acne, but it doesn't seem to be enough for any of the positive effects of the testosterone either. I plan to slowly increase from every other day to every day to see if it will help with my drive.

Last weekend I was in San Diego with my husband and mother-in-law for her visit to California. It was busy, but we had a great time. I told my husband it felt weird to be in San Diego and not have an appointment at SDSM. Since 2011 anytime I visited San Diego I had a trip to see Dr G.  I almost stopped in just to say hi, but I didn't want anyone to think I was crazy. I maybe should have though because when I sent my 5 month pictures this week, Dr. Goldstein thought I might have recurring glands and that we needed to talk about it. I’m not going to lie - that was not at all what I was expecting to hear, but I’m trying not to let it get me down. I’m still leaps and bounds from where I was before.

I had a phone appointment with Dr. G to discuss the plan of care for these silly glands. They pretty much showed up out of nowhere and can prove to be an issue. So far I haven't noticed any effects from the glands regarding lubrication or pain (that I know of). The local hormone cream and the Axiron should help. If they become painful and the medicine isn't working then the next step would be surgical removal. I'm really hoping we don't have to go down that road even though Dr G assured me it would be nothing like the vestibulectomy. 

17 weeks post op

I might as well start with the best possible news: my husband and I have been able to have mostly pain free sex! We tried a couple of times after dilation and a few times without dilating first. My pain is 2/10 with penetration that fades away. After about 10 minutes I start to feel burning sensation 2/10 for five to ten minutes after. Of course, we are very excited but are trying to take it slow and not mess anything up. I'm not completely healed (yet), but I'm leaps and bounds better than when I started, not to mention a lot further along than I thought I'd be at this stage. I've read that some people have problems starting at 4.5 months post-op with therapy regression, but I try not to think about it in hopes that it won't happen.

I had my 4th pelvic physical therapy session with Dr. Jen and she is very impressed with my recovery - so much so that I don't have to go back for in office therapy anymore. Surprisingly my muscles feel good, but there is definitely a band of scar tissue. The plan is to continue with the dilation at home until it is no longer painful. In addition to a few total-body stretches, I have some strengthening and relaxation exercises to do daily to keep my pelvic floor happy. After dilation my hubby sometimes does some perineal massage for 5-10 minutes. I'm using the Axiron every other day like Dr. G recommended because of my adverse reactions. Thankfully, I no longer have the persistent headaches and nausea, which makes life much easier. However, I am starting to see the dreaded acne flareup.

Now that I'm done with PT (hopefully) I sat down to calculate numbers for the vestibulectomy and recovery. I just have to say how thankful I am to the billing department at Alvarado hospital. They really looked into my insurance plan and have saved me thousands of dollars with the recommendation for cash pay!

4 months post-op

Wow - that is all I know to say! I'm now 4 months post op. I sent my pictures to Dr G and everything looks good. I've been back on the estradiol and testosterone combination to apply where the vestibule used to be to help keep the tissue healthy. I also got my lab results back and my free testosterone was half of what it should be so I started Axiron a week ago. I prefer the pellet, but it's just not feasible to go to San Diego to get it placed and my body eats it up way quicker than it is supposed to do. I've tried the Testim, but didn't seem to have any luck other than my leg hair growing entirely too fast. I haven't noticed much of a change with the Axiron yet other than persistent nausea and headaches, which I also experienced with the Testim. I always measure the exact amount with a syringe to make sure I don't get too much. Doctor Goldstein had me switch from daily to every other day to see if it will help with the symptoms. For the most part they are tolerable and just annoying although it can make being active in the heat a little bit difficult.

I've been doing physical therapy for a month now. I see my PT usually once a week for internal work and then use the dilator nightly. I usually give myself one night off a week typically after my last night of work. I've had some pretty good luck with therapy and Dr Jen is amazing if anyone is in the Ventura CA area. I am able to use the largest size dilator with minimal pain (3/10) with insertion that fades away after a few minutes. My PT suggested we try to have intercourse after I dilate for a few minutes first. We were both pretty nervous about this since I still have some pain and had originally planned to wait until dilating was completely pain free. However, we decided to give it a try and it was successful. We celebrated with sparkling apple cider and some strawberry cheesecake. I emailed Dr G later and of course even though it's late he responded with excitement. Have I mentioned how great of a doctor he is?

I never thought this is where we would be 4 months post op, but I have definitely been blessed! This whole vestibulodynia thing has been quite the journey. While I obviously would have rather not experienced this it has taught me to celebrate the small victories in life, be persistent with my healthcare, and keep open communication with my husband. Our relationship is definitely stronger as we've overcome each battle together. I can't wait to see what the next few weeks and months have in store for us!

3 month post op

Hooray, it’s been 3 months! The past few weeks were pretty busy; my husband and I are still getting adjusted to our new temporary home and trying to get back on a schedule. I’ve been back to work for about 2.5 weeks now, with a crazy schedule of 5 twelve hour shifts in a row leading up to this final check up appointment…talk about easing back into work. Surprisingly I felt OK and not abnormally tired. I’ve remained pain free for over a month now. Occasionally I feel some light pressure when I sit on hard surfaces, but it doesn’t hurt.

My husband and I ventured back to San Diego for the 3 month check up. I had an appointment with Debbie (the PT) for my first session with internal work. For the first time in years penetration of any kind was not painful! I will start seeing a therapist in our area, but wanted to start with an SDSM specialist first. After PT I headed over to the exam room to see Catherine and Dr. G. They still can’t believe how great my recovery has been. I know that I am truly blessed. They completed a vulvoscopy and said that everything looked great. Unless something unexpected happens I won’t have to make any more trips down to the office anymore. I just have to send Dr G pictures every month and keep in touch by email for any questions or concerns. It’s kind of sad thinking about not seeing the SDSM team anymore considering I’ve been going at least a couple of times a year since November of 2011 (although my bank account may be happier). We really tried everything to avoid surgery if at all possible and thankfully Dr Goldstein was never pushy. He really is such a fantastic doctor!

Dr Goldstein also told me that I can start doing whatever exercise I want. I still can’t believe that I’m excited to start running. I guess we’ll see how I feel about it in a few days. Up until this year I’ve always hated running. I’m definitely stoked to get back to some real hiking and biking. We already have a short camping and hiking trip scheduled for next week in the Santa Monica Mountains.

My husband and I decided that we wanted to celebrate the three month milestone. There’s so much that can happen during this time physically, emotionally and mentally for everyone involved. Not to mention we wanted to celebrate the great news we received at SDSM. After my appointments we just spent the day focusing on each other and the ability to show intimacy. We topped the day off with dinner, chocolate truffles and sparkling grape juice. Here’s to the next chapter in this journey. Bring on the pelvic physical therapy!

10 weeks post-op

It’s crazy to think that it has been 10 weeks since my surgery, but I’m still chugging along. My husband and I made the trip from San Diego to the Oxnard / Ventura CA area last week for me to start a new work contract. Thanks to the wonderful California traffic it took almost 5 hours to go 200 miles on the interstate, but I didn’t even need my donut pillow. I also just made my 3 month appointment to see Dr G and Catherine – the end of this journey is getting closer and closer!

At 9.5 weeks I went back to work. I had one day of 4 hour orientation where I sat 90% of the time and two 12 hour shifts two days in a row. Surprisingly, I felt pretty good overall. I didn’t have any surgery related pain – just a bit of achiness in my legs after I took my support hose off at night, but that’s normal when I haven’t worn them in awhile. Most surprisingly, I didn’t feel abnormally tired like I had anticipated. Since the surgery I have been wearing dresses most everyday with an occasional pair of oversized mesh shorts. This week was the first time that I had pants (dress pants and scrubs) on since the surgery, and they didn’t seem to bother me. Prior to the surgery my pain was primarily only during intercourse, but I still thought that pants might be slightly uncomfortable on the surgical area.

The last time I had any physical therapy was 2 weeks ago at SDSM. I’ve mostly been working on the breathing to relax the pelvic floor muscle. Debbie the PT said that some of my joints especially my hips seem a little too loose so she recommended the SI-LOC belt. I’ve been wearing that daily. I don’t really notice any difference, but she said the support should help the pelvic floor muscles so I’ll keep wearing it. It’s not uncomfortable it just makes my lower abdomen bulge a little more. I’m in the process of finding a physical therapist in my new area to start seeing at 3 months.

Now that I am back to work and have been pain free for weeks it’s sometimes hard for me to remember to take it easy and refrain from strenuous activities. I keep looking at the mountains around us and can’t wait to get back to hiking. There are so many places to explore, but I’ll continue on with my relatively boring recovery. The beach is always calling my name, too, and I’m okay with just laying by the ocean all day.

8 Weeks Post-Op

I can't believe it's been 2 months already! My husband and I are just hanging out in the San Diego area waiting for my next travel nurse assignment. My job is pretty physical, so the SDSM team thought I should wait at least until the 8 week mark before heading back to work. I fully anticipate the 12 hour shifts to be exhausting, but I know I will survive. We've ventured out a little bit, but most of my days are filled soaking up the sun, walking, or crafting.

Now for the best news of all: I've had practically no pain, and since the outer stitches dissolved 2 weeks ago I don't have any itching either. The surrounding skin is pretty tight so it does hurt to spread wide for pictures. I still take my pillow if I'm going to be sitting very upright on hard surfaces or for long periods of time. I could probably go without it, but it isn't hurting anything to use it. For the most part I feel like I'm back to my old self. On Monday my hubby and I went on a fairly easy 3 mile hike up Cowles Mountain and back, which is the highest peak in San Diego. We got some nice panorama views of San Diego County. The hike was a little more tiring than I would like to admit, but given what my body has gone through in the last 8 weeks I think I did pretty well. My pain maybe increased to a 1 but resolved quickly. After the hike we meandered through a couple of stores for a few more hours. Thankfully, I slept well for the first time in awhile and I woke up pain free. I'm ready to get back to some real hiking, biking, and swimming when that three month mark hits and, of course, when Dr G says I'm allowed. I've actually wanted to run the past few weeks, which is totally foreign to me.

I've been seeing the physical therapist at SDSM once a week while I'm in the area to help get me ready for work and to do some external work on my pelvic floor. She said everything looks great down there, and that only a trained eye would know that I had surgery. Debbie (the PT) is really nice, but I was so frustrated after my first appointment. My homework was to work on breathing lower into my abdomen in addition to some strength training. I tried and tried, but could never seem to get the pattern right and feel the right muscles moving. My husband found a video online that explained it a bit differently, and I was finally able to figure it out. Seriously who knew breathing could be so hard!
Each week my husband takes pictures to send to Dr Goldstein. In one of my pre-op conversations with Dr G he said I could make a slide show of my pictures or that he would do it himself. I figured I could save him the effort and have my husband make a collage of the pictures. It has been such a relief and encouragement to look at those pictures side by side. Just looking at the single picture it's hard to see how much progress was made in one week, but when you look at the comparison you can see less redness, fewer stitches, etc. It really puts everything in perspective.

Prior to the surgery, I had been working on being more active and losing weight. I was having some pretty decent success so needless to say I was a bit nervous about gaining weight during my recovery period. I have been using the free app "My Fitness Pal" regularly since February. There is also an online version. You enter your details (height, weight, activity level, weight loss goal) and it calculates your daily recommended calories. During recovery I set my activity level to sedentary and recorded each time I walked (speed and time). If you aren't sure of how fast you are walking you can use the free app "Run keeper" to find out. Both apps are easy to use. I'm happy to report that at 8 weeks post-op I haven't gained any weight.

6.5 weeks postop

My husband and I made the trip back to San Diego on Wednesday, post op day 42. Due to some traveling situations I had scheduled to see Dr. Goldstein at 6 weeks and 1 day. We had a later flight so we spent the last day doing some of our favorite things in St. Louis - the Zoo in Forest Park and eating at Zia’s on The Hill (the Italian district). I was able to walk without any problems for over 3 hours at the zoo. I managed most of the day without needing my donut pillow, but used it at the airport and on the flights just in case. My pain was a solid 0-1 until I got searched a little too aggressively at the airport, and it increased to a 2.

On Thursday I saw Dr. Goldstein and the nurse practitioner. They still seemed to be impressed with how well I am doing. All of my external stitches were gone and there were no signs of cysts! Dr G said the internal stitches should dissolve around 8 weeks so he’d like me to stay off work at least until then. Honestly, I’m not in a rush because I’d rather not mess anything up. Plus it’s kind of nice being lazy. While we were at the office we discussed plans for physical therapy. I hadn’t planned on doing anything until the three month mark, but Dr. Goldstein said that some people have been having good luck starting early with skin rolling and other manipulation through the rectum. He said that the physical therapist can do a lot of the same things through either entrance. He recommended that I talked with Debbie the physical therapist to see what her thoughts were. I saw Debbie that afternoon for a PT appointment. I think the plan is to work on some pelvic floor stuff as well as getting me ready to go back to work. I’m not really concerned about being strong enough to go back to work.  I’ve actually been on my feet 8+ hour for the last 4 days and have been fine. Although my pain increased to a 2, I expected it to go up a little bit. I haven’t been using any ice or heat in about a week, and I haven’t taken the Vistaril since we returned to San Diego. I only use my donut pillow if I’m sitting very upright like in a kitchen or office chair. The plan is to continue with my boring (but apparently great) recovery!

Post Op Day 40 and a Note on Surgical Billing

My recovery is still going well. On Saturday (6/15) my husband and I went to a wedding. We had a good time, and I was able to dance in moderation for 2- 2.5 hours without pain, at least not surgery related pain, but my feet were killing me! I’m not sure why I thought it’d be a good idea to wear high heels the entire time since I haven’t worn any shoes besides flats and sandals since the surgery. Live and learn, I suppose.

My pain is still totally tolerable at a 0-1 most days. The itching seems to be better as well. I think I’m mostly using the ice out of habit although it does help when the itching starts. I’m still taking half a tablet of vistaril at night for itching; it helps me sleep, too. When we get back to our own bed in California I think I’ll try to stop taking the Vistaril unless I really need it. I haven’t been using the heat pack at night lately either.

On top of the bill for Dr. Goldstein I received my bill from Alvarado hospital a few weeks ago. My insurance isn’t the best and was really only planned to be used for emergencies. I have to pay out of pocket until I hit my deductible before my insurance covers anything and of course the deductible is higher for out of network, which is why the billing department at Alvarado hospital suggested that I pay the flat private payment amount. I’m thankful that they did because the hospital bill alone would have been almost $24,000 had they billed the insurance company! As a nurse you hear people talk about their bills and how much medicines and procedures cost, but it never really hit me until I was looking at the individual charges. I’ll really be thinking about those sutures when I’m the circulating nurse in the OR and see one of those get dropped on the floor and subsequently be thrown away. Anyway, you will also probably receive bills for anesthesia and a bill from Alvarado pathology department. If you look on the detailed bill from the hospital there are anesthesia charges including time and meds as well as pathology charges for your labs. Those are the hospital charges. The individual bills that you receive are the professional charges. For example, the pathologist views the labs and examines the vestibule tissue. It seems weird, but that’s just how it goes. FYI you can pay the pathology bill with your credit card if you call the number on the bill. They will send a receipt in the mail that you can submit to your insurance and save for taxes. So far the surgery has cost a little less than $8,000, not including my unpaid time off work, but it could have been a lot worse. Thank you Alvarado Financial Department for being so easy to deal with…

Post op Day 35…a few days late…

It's hard to believe that it has already been five weeks. Things are continuing to go well. I have very little pain most of time, but occasionally it creeps up to a level 1 or 2. Even still, I haven't had to use anything for pain in over a week. My Percocet bottle is still mostly full and I'm sure my stomach is happy to have a break from all that Ibuprofen. When I do have pain, I've noticed it's because I've moved a certain way or have been on my feet for a long period of time.

We had a garage sale on Saturday and I had been on my feet on and off for about 8 hours. The pain did make an appearance that night, although it wasn't too bad. It makes me nervous about going back to my 12 hour shifts with little rest periods as a nurse. Before the surgery Catherine the NP at SDSM had mentioned that it would be really tough to bounce back, and that six weeks may be a bit unrealistic. She is probably right. I also do a lot of moving heavy patients numbed with epidurals, pivoting patients to wheelchairs whose legs may still be a little numb, and pushing hospital beds or stretchers. I will have to talk to Dr G about what he thinks is the right thing to do. I've come too far with recovery, unpaid time off work, and paying for the surgery out of pocket to do anything to risk messing up. In the mean time I'm trying to increase the speed, duration, and number of walks to increase my endurance.

Dr. Goldstein assured me everything looks great based on pictures. It looks like quite a few stitches have dissolved. A few times I've noticed a stitch on the toilet paper after wiping which kind of makes my heart sink. I always pray that they are just dissolving and I didn't pop one out! Even with those stitches out it's still pretty itchy. The ice still works well during the day to alleviate the annoyance – I find myself using it at least 50% of the day. It seems to be a little worse at night so I'm still loving that Vistaril. Due to scheduling difficulties I had my 6 week appointment with Dr. Hartzell via phone a few days early. Honestly as nice as she is her appointments are what stresses me out the most. I'm just not comfortable talking about my feelings. Thankfully, I think the therapy thing is much easier over the phone. She said everything seems to be going well, but is nervous about me returning to work. Chances are I'll end up with a longer recovery than I first anticipated, but we'll find out for sure soon.

My donut pillow is still one of my best friends; I take it pretty much everywhere. I can sit without it unless I'm sitting straight up on a hard surface or if I'm using an ice pack. Rather than shell out the money for a real one, my husband cut the center square out of a cheap kitchen chair cushion and I sewed the material shut. It works well for me with plenty of room for ice. It sounds a bit ghetto but works perfectly and was a fraction of the price! In fact, I like it better than the foam one from Walgreens that my mother in law has :)

Post Op Day 28

Things seem to be going pretty well. I spent another weekend surrounded by my nieces, nephews and siblings trying to interact without hurting myself. On Monday I went to a St. Louis Cardinals baseball game and was able to sit comfortably in the bleachers section on my donut pillow for the whole game (which we won, of course). I can sit without my pillow as long as I’m not sitting perfectly up right because of pressure from my ice pack. There were a few stairs to climb at the stadium, but I took it slow not caring if I held up the line behind me.

My pain is still well under control – something like a 1-2 out of 10. I haven’t taken any pain medications the last few days—not even Ibuprofen. I take a vistaril and use a heated rice pack at bedtime. The heat pack does feel nice, but I think it just keeps me warm more than anything. The itching is still annoying so I have continued to use ice most of the day instead of the Vistaril since it makes me so sleepy. I've still been taking 2 baths a day for 90 minutes each time. I’ll do anything I can to help speed up those stitches coming out! My muscles are pretty achy from inactivity and laying around. I've been walking 3-4 times a day for 30-45 minutes and walking around the house every hour or so.

I called yesterday to schedule my six week appointment at SDSM. It’s hard to believe I’ll be seeing them in two weeks. I’m actually surprised at how fast this recovery has been going by.

Post Op day 21

There's not a whole lot of change since my last post, which I don't believe is a bad thing. I think I've had a pretty good recovery so far. I'm back home spending time with my family. We actually went "camping" in RVs over the Memorial Day weekend with my immediate family. It was a little bit difficult not to play with my niece and nephew, but it all worked out. Normally I pick them up, run around and let them climb all over me, but this time they knew that Auntie Missy had an "owie" so they had to be easy. I also got to spend the weekend with my newest nephew who is 8 months old. I don't get to see him much so I like to love on him as much as possible. Unfortunately he is well over the 10lb weight limit so I was afraid to pick him up. Normally I would get situated and have someone set him on my lap.

I'm still taking 800mg of Ibuprofen for what little pain I have, typically 1-2 times a day. Using ice during the day makes the itching manageable so I only take the Vistaril at night since it makes me sleepy. I've gotten pretty good at moving while keeping the ice in place. I've consolidated my baths to two 90+ minute sessions. It seems to give me more time with my family as well as conserving water. I'm also still walking 20-30 minutes every couple of hours, but it's not the activity that I'm used to. The decrease in activity has my body a little confused. I've had problems with my left piriformis muscle (in my bottom) for a couple of years that eventually causes hip discomfort that is only relieved by stretching, being active and a chiropractic adjustment. I'm afraid the stretches I have used before may pull a little on my stitches so I haven't been doing them which has my muscle irritated. Hopefully I can restart the stretching and see a chiropractor after I see Dr. G for my 6 week follow up.

Post op Day 14

Yay! It’s been two weeks and I’m still going strong. I’m a nurse so I like to take a peek to make sure everything looks okay in between appointments especially if I feel anything abnormal. On Saturday one of my stitches looked odd. I got pretty nervous, emailed Dr G and decided I would just be on bedrest with bathroom privileges until I heard back. It was a Saturday night and Dr G responded saying everything looked fine and just to take it easy. I am so thankful that he is so devoted and checks his email even on a Saturday night. I’ve had a doctor yell at me for calling the advice line before 10pm on a weekday when I was having an adverse reaction to the medicine and the instructions said to call your doctor immediately. Dr. Goldstein really is one of a kind!

I saw Dr. Goldstein and Catherine the NP on Monday, Post op Day 12. They said that everything looks great and that I seem to be doing really well. They told me I was definitely okay to fly home the next day and to keep sending pictures. I’m a little sad I won’t be seeing them every week to hear everything looks okay. I know they can tell by pictures, but it’s not quite the same. Plus, everyone at the office is so friendly that I always leave there feeling happy and cared about.

On Tuesday my husband and I journeyed back to the St. Louis area to spend the next month with our families. I never seem to be able to find a direct flight to St. Louis so we had a layover in Denver. As advised by the other ladies I called the airline ahead of time to set up wheelchair assistance. I know I can walk but not very fast, and our layover in Denver was only supposed to be 30 minutes. If we landed late and our next gate was far away I wouldn’t make it or would be hurting if I did. In actuality, I didn’t need to call, but they did add it on to my itinerary so someone would be waiting for me at each stop for the layover and in STL. Everyone was super nice and helpful, although I did notice a lot of weird look from other passengers probably thinking that I didn’t need a wheelchair. I found it easier just to look down at the ground during transport. It was nice not having to stand in line at security and being the first to board the plane. We were able to sit in the first row with extra leg room and I could easily stand if I needed to. I asked the flight attendant for a couple glasses of ice for my ice pack. She even offered to fill it for me. A word of wisdom: do not use the ice bag from the hospital without placing it in a plastic bag first. I only used the hospital one on the drive home and then we had frozen gel packs that I liked instead. Since the gel packs weren’t refillable I thought I’d use the one from the hospital during the flight. It had a plastic lining and cloth inside so I thought it would work nicely. Halfway to Denver I felt really cold down there. It turns out that the ice pack leaked. My pillow and dress were both really wet and ended up staying that way for most of the trip! I also found that my maxi dress worked really well for comfort and it hides the ice pack nicely.

My pain is still well under control. I’ve been taking 800mg of Ibuprofen, typically every 8-10 hours. The itching got pretty intense and was not relieved by Benadryl so I opted to get the Vistaril. The ice during the day makes the itching manageable so I only take the Vistaril at night. Between the Vistaril and the Percocet I sleep pretty well. When I wake up in the morning I grab Ibuprofen, a heat pack or an ice pack and try to sleep in a bit longer. I can’t seem to fit the 4 baths in, so I’ve been taking 2-3 longer baths. I usually stay in for 60-90 minutes at a time. It doesn’t really help with my pain (primarily because my pain is already well managed), but it is supposed to help dissolve the stitches. Dr Goldstein keeps reminding me to have a quiet recovery so I take slow walks throughout the day usually about 20-30 minutes every 2 hours. I’m really trying hard to be a good patient since I know medical professionals can be the worst!

Post Op Day 7

It’s hard to believe it’s been a week since I had my surgery. Sometimes it feels like it was only yesterday, while other times it seems like it was so long ago. I had my first post-op appointment today with Dr. G and Catherine the NP. They assured me that everything looked great and was healing nicely. It was nice to have some re-assurance - I’ve been trying to follow the rules, but I sometimes get nervous that I’ve messed something up.

For the most part, my pain has been completely under control. Monday was the worst so far – in addition to the additional pain I was extremely tired and grouchy. Thankfully, I was able to sleep most of the day. Dr Goldstein was very encouraging, reminding me it would get better. I’ve still been taking 800mg ibuprofen every 8 hours and sometimes a Percocet at bedtime. I’ve been walking about every 90 minutes for 20minutes at a time; it feels so much better than sitting! When I’m not walking I rotate ice and heat which keeps most of the pain at bay. Sometimes I put ice on and decide it’s not working and switch to the heat pack. Today I took a Percocet before my appointment in preparation for the pain that was sure to come with the exam, but between the car ride and the Percocet I ended up nauseated and decided I’d prefer not to do that again.

While I was at the office I walked a few thank you cards over to the nurses at the hospital to show my appreciation for taking such good care of me. I typically work at well known teaching hospitals and was a bit nervous about going to a smaller hospital. They did an excellent job, and I just wanted them to know.

Since I haven’t been using the pain medication regularly, I didn’t need the miralax for help with bowel movements. I found that making fresh apple or grape juice works better anyway. I’m still trying to have fruit and Greek yogurt smoothies daily in addition to taking a fiber supplement twice a day. So far it seems to be working well.

The itching from my stitches has been getting worse. I don’t feel it as much with the heat or ice on. Dr Goldstein’s team gave me a prescription for Vistaril if I need it, but I am fairly sensitive to medication so I think I’ll try Benadryl first. The last time I took a single Benadryl I slept for 19 hours and woke up very groggy.

We will be in San Diego for almost another week before we go home for a month to our families. I really wanted to have a handle on my pain before staying with our parents because I don’t like to show pain or emotions to anyone other than my husband. I’m trying my best to enjoy my recovery per Dr. G’s guidelines, but sometimes it’s hard. I like to spend my time being active, but hiking, biking, running (when I can convince myself to do it) swimming and chilling in the hot tub are all off limits during recovery. I enjoy making cards, painting and scrapbooking, but can only sit comfortably for so long. I really can’t sit up right for more than 30 minutes without pain which makes things difficult. It’ll take some adjustment, but I’ll figure out exactly how to enjoy it. For now the things I look forward to are the quiet walks with my husband in the beautiful San Diego weather and watching movies each night together. Here’s to another week of progress and healing!

Post op day 2 and 3

Post op Day 2

I’m still trying to get a schedule down for walking and baths, but otherwise I feel great. My pain is still minimal which I assume will change as the exparel wears off. I know it’s coming, but I just don’t know when. I am passing lots of gas, but I still haven’t had a bowel movement and it has been over 3 days. Dr G recommended that I listen to my bowel sounds to see if I need to medically intervene. I’ve been taking Miralax twice a day…I know I know the bottle says once a day, but one of the docs that I work with said it’s totally fine to take it twice a day for a short period of time. Plus, I’ve been walking, drinking fruit smoothies, made a large glass of fresh grape juice and am taking fiber tablets. My bowel sounds were pretty sluggish so I opted to do the Fleet’s enema. I’ve given to it patients, but something about having it myself was not pleasant. Dr Goldstein was right of course…it’s really the only thing that works at this stage.                

Post op Day 3

Well it’s been over 72 hours since I got the Exparel so it should be worn off by now. Surprisingly my pain is still pretty good at 3-4 out of 10. I’ve gotten my routine down mostly with waking, eating a light meal, bathing, and repeating. Today I even found time to sit outside in my lawn chair and soak up some wonderful San Diego sunshine. I’ve just been taking 800mg Ibuprofen every 8 hours for my pain. I only want to use the Percocet if I need it. I use the peri-bottle after I pee each time just to keep things clean and then of course pat dry. Throughout the day I rotate between an ice pack and a heat pack for pain relief. I really like the heat at night since I use a rice sock it stays warm for a long time while I’m asleep. I usually wake up around 6am with pain 4 out of 10. I grab an ice pack take 800mg of Ibuprofen and head back to sleep. My ambien is still sitting on the counter untouched. I’ve found that sleeping on my side with a pillow between my knees is the least painful. I’m still taking miralax once a day and eating a fruit smoothie to help prevent constipation. I’m slowly advancing to a regular diet. Here’s to hoping things continue. All I can say is God is good and has things under control.

Post Op Day 1

It’s the first day of post-op recovery and I actually feel fantastic. I have hardly any pain thanks to the Exparel they gave me. I’m a little nervous about what the pain will be like when the medicine does wear off. I know it’s coming… I’ve also been trying to fit in 4 sitz baths in and slowly walk a bit, but I need to figure out a routine. Dr. Goldstein and his staff have contacted me multiple times today just to check in. I can’t say enough positive things about their follow up and bedside manner. I’ve worked with numerous medical staff, and this is far from the normal experience.

Things to consider after surgery:

• Complete Pelvic rest for 3 months
• No exercise for 3 months other than walking
• Avoid stimulating situations – Arousal can cause problems such as Skenes or Bartholin’s cysts
• If flying call the airline ahead of time to set up a wheelchair pickup

Surviving a Full Liquid Diet – Things you can have:

• 6-8 glasses of liquid per day: juice, water, milk, carbonated beverages, coffee, tea, or gatorade
• Soups – cheese, tomato, pureed potato, etc
• Broth
• Yogurt – Greek vanilla is great and has extra protein
• Jello
• Oatmeal
• Ice Cream and milkshakes
• Honey, Jelly, or Syrup
• Liquid meal replacements – carnation instant breakfast, slim fast, ensure, etc
• Blended fruit smoothies

Day of Surgery

I wasn’t nervous until the nurses began wheeling me into the OR, but that was short lived. Dr. Goldstein introduced me to all the nurses, scrub techs and anesthesia. Soon enough, I was completely unconscious. I don’t remember much except the last few minutes in recovery. I had really only been worried about being a needy patient, and sad enough that it was I became. I was overcome with nausea from the anesthesia. The anesthesiologist did give me a nice cocktail in the OR, but I still ended up incredibly nauseated which got worse with each movement. I tried to wait it out in the hospital, but realizing that it wasn’t getting much better I opted to go home instead of taking up a valuable bed. When we finally got home, I just crawled into bed. I woke up a few hours later and the nausea was mostly gone. Dr. Goldstein called a couple of times to check on me before the day was over.

Preparing for surgery:

• Remove all metal and jewelry – leave it at home or have your family member keep it
• Leave all valuables at home or let your family be responsible for them
• Don’t wear dark colored nail polish – it can mess up the oxygen sensor reading (pulse ox)
• Dress comfortably – something that’s easy to change in and out of
• Check with the doctor to see if you can wear your contacts. Bring glasses & a case just to be safe.
• Do not use lotion, oils or creams before your surgery
• Make sure you have someone to drive you home or set up an appointment with a medical transfer van
• Make a list of all medication you take, the dosage, and the last time you took them
• Make a plan with your doctor about when to stop taking your prescriptions
• Do not take any herbal medicine for 2 weeks prior to your surgery
• Stop taking medications like Tylenol and Ibuprofen 5 days before your surgery
• Follow the diet order – don’t eat or drink anything after midnight the night before

Surgery and Preparation

We arrived in San Diego on May 5th to prepare for the surgery. On the 7th we had all of our pre-op appointments at the hospital and with Dr. Goldstein’s team. This involved another Q-tip test. I wasn’t really worried about the surgery. I mean, I didn’t want to have surgery, but it was the only option left. It also probably helps that I work in a hospital and am familiar with the OR.

Things to gather before the Vestibulectomy:

• Sitz Bath – a small tub which will allow your sensitive parts to be submerged
• Soft Ice packs
• Mesh panies
• Maxi pads
• Donut pillow – an inflatable child’s inner tube is a cheap alternative
• Comfortable clothes – tight fit clothes will not feel good
• Ted hose or thigh high support hose – keeps you warm and your blood flowing during inactivity
• Squirt bottle (Peri-bottle) – Spraying water while you pee will relieve pain & keep you clean
• Fleet Enemas – In case you haven’t had a bowel movement after a few days
• Miralax – To keep your stools softer while on pain meds
• Chewable Fiber – Might help since you aren’t eating normally
• Lots of entertainment – TV, movies, books, crafts
• Meal Plans – you will be on a full liquid diet until your first bowel movement

History, Diagnosis and Treatment

No matter how I try to avoid the subject, rephrase the issue, or forget about the problem all together, there is really no way around it. For a long time now I haven’t been able to have sex without experiencing pain, but more on that later. I suppose I should start at the beginning.

I have always had vaginal issues. From a young age, I suffered with recurrent urinary tract infections for no apparent reason. Later on, I was diagnosed with and treated for endometriosis, although no official tests were ever performed. This treatment consisted of medically induced menopause at age 16 which lasted for 9 months. With the lingering endometriosis and irregular periods, my OBGYN prescribed oral birth control. I continued to use birth control to regulate my periods for 9 more years. 

It was in college that I met my best friend. We lived in the same dorm only one floor apart. After a year of hanging out it became apparent that we went meant for something more, and we began dating the following summer. The two of us were inseparable, depending upon each other for everything. What can I say - we were young and in love! A few years passed; we both graduated and finally married in October of 2009. Believe it or not, we had abstained from sex until we got married. I had the Mirena IUD placed about a month prior, but it didn’t really start to kick in until a bit later. That’s when the real problems began.

I started to feel burning during intercourse. At first, we thought this had everything to do with the type of lubricant we were using or was related to my endo, but as time went on, it got worse no matter what we tried to do differently. We took our “real” honeymoon in March of 2010, and by then the pain (burning) was so bad we could not have intercourse again. As a last ditch effort I had the Mirena removed after reading various reports that it could be the cause, but the pain persisted. I also noticed a severely diminished sex drive. I saw a couple of physicians and a physical therapist who diagnosed me with vaginismis and recommended various exercises, but none of them helped. Thankfully my pain was only related to intercourse. I could still wear whatever I wanted, ride my bike, and maintain an active lifestyle.

In late 2010, I started working as a travel nurse in labor and delivery, and we moved from the Midwest to California. It was one of the nurses from my home hospital in St. Louis who saw Dr. Andrew Goldstein on TV and told me I should look him up. Upon searching I found the book “When Sex Hurts.” I read the book and realized that the second author, Dr. Irwin Goldstein, at San Diego Sexual Medicine was just a few hours from my current travel assignment. I set up a courtesy call, and he recommended I find a new physical therapist in the area through the APTA website She prescribed various exercises and dilation which did help to strengthen my pelvic floor and relieve the pain, but it was still there. I also tried using 1% topical Lidocane as recommended in the book, but it only made the pain worse.

I first saw Dr. Goldstein on November 1, 2011. He reviewed my lab results, checked my pudenal nerve, and completed a Q-tip test. My testosterone was really low so he placed a pellet implant and had me apply Estrace cream to my vagina twice a day. Slowly, my sexual drive increased, and my husband and I were able to have pain free sex for the first time in quite a while. After a few more times we started to feel hopeful, but unfortunately, once the pellet dissolved the pain returned. Dr G. recommended using Testim too as a source for testosterone because I couldn’t make it to San Diego for another pellet placement, but the Testim did nothing but cause my body hair to grow and acne to flair up. I went back to see Dr. Goldstein in April of 2012 and had two pellets placed. Again we managed to have a few weeks of enjoyable, pain free sex, but once again it dissolved quickly and the pain resumed. In September, 2012, two more pellets were placed and I was given Axiron to use as well. This proved to be too much testosterone at once, causing hypersensitivity without really reducing the pain at all. Since this was no longer a hormonal issue, my diagnosis was changed to provoked vestibulodynia.

In December of 2012, my husband and I made another trip to San Diego for the VAT test which would numb my vestibule area – the cause of my pain – so we could attempt intercourse. Unfortunately, I didn’t stay numb for long from the VAT, but it did indicate that a Vestibulectomy – surgery to remove my vestibule – was the next step since we had exhausted all other options. We tried to delay the surgery to save money because it would not be covered by my insurance. We were also trying to figure out the timing for the recovery to coincide with work and time between assignments. However, after much thought, prayer and advice from our parents we decided it was best not to wait. My surgery was scheduled for May 8, 2013, and we headed back to San Diego a few days early to prepare.