His and Her Health

MSM,

Try not to worry. I had a very similar situation (I definitely understand the feeling of trying to pass a cement bowling ball). I was in so much pain and discomfort from the constipation and I did manage to pop a few stitches while trying to go to the bathroom. I just kept up with the sitz baths and taking it easy, and I healed very well in the end. I think I do have a very small amt of scar tissue, but nothing that interferes too much with my daily life. Overall, my surgery was definitely a success, in spite of the fact that I popped stitches while constipated. You should be fine, just make sure you don't overdo it and keep resting as much as possible. Good luck!

Anna

Lulu, congratulations on having your surgery! Sounds like your recovery is going pretty similar to how mine did. My swelling didn't last too long, but I had some very nasty bruises for a few weeks.

As for walking, I had a hard time with that too. However, I wasn't shuffling because I had to keep my legs close, I actually had my legs spread a little further than normal cause it was too painful to walk with them together. I think my stride was fairly normal length, I don't remember having to take short steps. I didn't have any trouble with feeling like my stitches were pulling while I walked because my legs were apart. My problem ended up more with severe pain in my hips from having my legs spread all the time. When I was laying down I had pillows between my legs and when I was walking I had my legs spread more wide. It was just too painful for me have them together at all. I wasn't able to walk very normal for about four weeks. I certainly felt a little self conscious because I was walking like someone who had just ridden a horse for about four days. So, I can tell you that your stitches probably won't pull from walking with your legs further apart or longer strides, but everyone is different. It may be more painful for you that way. I think you just have to adapt to what your body feels, walk slowly and see how you feel. Hope that helps!

Anna

Holly, just wondering how your recovery is going. Hopefully you are getting to the part where things start to improve and you feel like you may actually be a normal person someday!

Just as an update to everyone, I had my surgery in January and I am doing pretty well. I do still have some pain, and I get sore after intercourse for a few hours. There are occasional days when I have a lot of general discomfort down there and feel like I'd benefit from sitting in a warm bath (instead of running around at work). However, overall, things are better than they were. No more stabbing pain out of the blue while walking or sitting, no more excruciating pain that keeps me from having sex at all, no more laying in bed miserable for hours after intercourse.

For those of you reading this whole message board and stressing over whether to have surgery, I feel for you. This is a huge decision and it can obviously go either way. There are certainly people who have a good outcome and those who have a terrible outcome. However, for me, I can say the surgery was completely worth it and I would do it all over again.

Good luck to all of you, no matter where you are in the process. May we all find a way to deal with the pain and stress of this complicated problem.

Holly,

Congrats on your surgery! It is a big decision and a hard one to make, and I hope it will be a great outcome for you. I had my surgery January 25 and it sounds like your recovery is going fairly similar to what mine was.

I agree with your MD that you are probably not ready to go back to work yet. Of course it depends on what type of work you do, but I was off for 6 wks and it’s a good thing I was. I am a nurse so I do a lot of walking, lifting, bending, etc., but it was pretty tiring when I went back. There is no way I could have gone back much sooner.

As far as difficulty with sitting/walking, I had the same thing. Sitting without pain was actually one of the last things I could do, and it seems like it was several weeks before I got there. I couldn’t even sit up for more than 5 min at a time for about 2 wks, and even then it had to be on a donut pillow. It was a long time before I could sit on a chair or anything like that. I think it was about 3 wks out when I was able to sit much more comfortably if I sat back, but if I leaned forward at all I had quite a bit of pain. I would try not to sit too much if you can. I spent the majority of the first few weeks laying down and I think that really helped with the healing. You don’t want to put too much pressure on it. I was able to walk much earlier than sitting, but it was definitely in short distances. I also walked with my legs spread - kind of like a cowboy who rode the horse for too long… After about three weeks I was able to walk much more normal and for longer distances.

You had also asked earlier about pain meds. I was on Percocet and Ibuprofen around the clock every day for about 2 wks. I slowly weaned myself off by the end of the third week. However, there were still bad days when I had done too much and had to take pain meds here and there for several weeks. Especially when I went back to work, standing and walking for 12 hr shifts I had to take pain meds when I got home for the first few days.

I am sure it has been hard not to pick up your kiddos. As hard as it is, I would strongly caution you to not do it. I tore a few stitches (mine was from trying to go to the bathroom – I was VERY constipated) and it was not fun. But even if you don’t tear a stitch from doing it, the extra weight puts way too much pressure on the area. You really shouldn’t be lifting anything more than 10 lbs for at least another couple weeks. I know it is hard to take things slowly with the recovery but the more you rush it the more complications and pain you can end up with. I promise you, it will be worth it in the end.

So, as a seven month post-op veteran, it sounds like things are going well for your recovery. Of course, everyone is different but I did not feel like I made major progress until 3-4 wks out. I can tell you that for me, the surgery was worth it. It was by no means a cure, I do still have pain with intercourse. However, I can now get through it without crying or just giving up. And, I can actually have some very enjoyable moments that I had never felt before the surgery cause there was so much pain. Before the surgery it was pretty much excruciating from start to finish (and for about 12 hours afterward). Now it is only a little bit painful during the beginning, and there are actually times after we get started that I can honestly say I have no pain. After we finish it is a little sore, but nothing like the burning and raw feeling that I had before.

I don’t know whether the pain will ever come back because I am still fairly recent from my surgery. There are times that I think the pain is coming back a little, but then there are times when it is fine so I think it will vary a lot. Like I said though, the pain I have now is about 1/100th of what it was before the surgery so I can certainly live with it. I would also caution you on that front too though, don't have intercourse too early! And I would definitely recommend using dilators first. Did your MD give you some? It is really important to start out very small and slow and work your way up a little at a time. I actually used the dilators for 3 wks before I had sex. Since you can go slowly and just let it sit there and stretch you without much actual mvmt, it really is best. The tissue will have to be stretched out and the best way to do it is a little at a time.

Anyway, that is all for now. Thanks for sharing how your recovery is going and I urge you to keep it up! There were good days and bad days (both physically and emotionally) for me for several wks, but remember that there is a light at the end of the tunnel and you will get better. Just make sure you take things slow and easy and give your body time to heal.

Anna

As everyone has mentioned here, finding the right doctor/clinic/PT/etc is key in the success of your treatment. It is very unfortunate that there are so few providers out there who are truly good in this area and can provide effective treatment. Like others, I did a lot of researching and traveling to find the answer only to come back frustrated, in pain, and with a lot less money.

I know that this forum consists mostly patients of Dr Goldstein, but I did just want to mention that I had my vestibulectomy done in Utah (I live in NM and travel was much cheaper) by an amazing doctor in the University of Utah clinic. If anyone lives in this part of the country and wants a good recommendation, he would be it. When I saw him in February he had done almost 500 vestibulectomies so he is very experienced and has many pt's like me who have to travel to see him. If he evaluates you and feels like you are a candidate for surgery according to HIS criteria, he has a very high success rate.

I think that since all of us have seen so many doctors (some good and some bad) that it would be nice to be able to share our advice and recommendations to each other, because maybe that would help people eliminate some of the wasted time and money seeing people who don't help. I know that when I was searching for doctors, PT, surgeons, etc. I would have loved to have a resource and some recommendations from real pt's who have similar problems.

Unfortunately, I know there are rules on this forum about what we can and cannot post. Administrator, is there any way for us to post information like that here (or possibly on a new thread somewhere)? I know that when people post specific doctor info or names it has sometimes been removed. Just wondering if there was anything we can do on this forum because it sounds like all of us have seen some good, bad, and ugly in the search for treatment.

For the time being, if anyone wants the name of my surgeon in Utah (or wants to know about where I have gone in the NM area that was not successful) feel free to email me. I am hoping my email is in my profile now, because I haven't been able to get it to work in the past and when I put my email address in a post it was removed. So if you try to email me and it doesn't work just let me know and we'll see what we can figure out.

Hello all. I have not posted for a while, but I have kept up with reading everyone else's posts. I have found it interesting to see the major variation in opinions about surgery. Especially lately, it seems as though there are a lot of people who are fairly anti-surgery. While I understand that every case is different and each person's pain is caused by different issues, I just wanted to mention that surgery can be helpful for some.

My case was probably not as complicated as some of the others' here, but as most others I suffered through years of pain and failed treatments, countless doctor's appts, and lots of emotional hell. I tried every drug we could think of, among other things. The only thing I did not try was PT (mostly because there was not a PT in Albuquerque that specialized in pelvic pain and I wasn't willing to see someone who wasn't an expert in the area). However, I can say that in my case surgery was the right thing to do.

My surgery was a pretty big success and has greatly decreased my pain. I still have very occasional shooting pain and overall soreness, and intercourse is still slightly painful during the beginning, sometimes painful afterward (it seems that the longer we go btwn the worse the pain is). However, this is a vast improvement over daily pain, complete inability to wear tampons, and almost no ability to have intercourse. So while I cannot by any means say I am cured, I am a whole different person than I was prior to surgery.

The thing that has improved the most is pain with intercourse. I can honestly say there are things I felt after the surgery that I wasn't even aware existed, because prior to the surgery the only thing I could feel was pain. And there are times when I am completely pain free after intercourse, as opposed to the previous full day of being unable to sit/stand/walk after having sex.

Last year I was where many of you are now, contemplating whether to have the surgery and knowing that if it made the pain worse that I may not be able to ever tolerate intercourse again. It is unfortunate that the outcomes seem to be so varied, but I want to reiterate that -- while surgery should never be something you take lightly or rush into -- it is sometimes the best treatment option. And if I were somehow able to know that 9 months of PT would have gotten me to about the same place as 1 day of surgery and 6-8 weeks of recovery, I would still go for the surgery in a heartbeat.

I am so sorry for those of you who have had a bad outcome for the surgery, but I do just want people to know that surgery can be an improvement for some. If only there was an effective diagnostic test or something to predict who will do better with surgery and who won't...

Mandy,

I have the "Hide E-mail" option as no, but who knows what is going wrong. My email address is Please feel free to email me.

Anna



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I forgot to include one thing in my other post. I know that I was concerned about the financial impact when I was considering surgery, and I was wondering how much other people had spent. For me, the bills for just the sugery (doctor, anesthesia, one follow-up visit, etc.) was just over $5,000. Of course, part of this was picked up by insurance. Unfortunately, I had to have my surgery in another state which included travel, lodging, food, etc.

All total, what I paid out of pocket for everything was $3,000 (about $2,000 for surgery and $1,000 for travel and lodging). Fortunately, the way my time frame worked out I was able to plan for the surgery cost by increasing my healthcare spending account at work. This helped a lot when I had to write $2,000 worth of checks at one time for the surgery; if I didn't have the money already set aside it would have been difficult.

However, please don't let these numbers scare you!! I know everyone has a different outcome, but mine so far has been good. I am not 100% pain free but I am so much better than I have ever been before. Whatever you have to do, don't let the money be any reason to deter you from having the surgery. It may well improve your quality of life, and you can't put a price on that.

I haven't been on in a while, so I wanted to give an update. I had my partial vestibulectomy on Jan 25, approx 4 months ago. I am happy to say that there is definite improvement. I have only had sex a few times because I waited until the middle of April to try the first time. I was so nervous that it would still hurt and do more damage emotionally than I could contend with, and I just knew that I would lose my mind for good if there were no improvement after the surgery. I also wanted to give pleny of time for healing. Since our first go round, each time has gotten better. I can come pretty close to saying that I fully enjoyed sex the last time, and had the best orgasm I have ever had in my life!

Don't get me wrong, there is still some pain. It is the worst with entry and for the first few minutes, but it is more of a stretching pain. The intense burning I used to feel is NOT there!! I used to go straight from sex to the bathroom to rinse off with cool water to try to relieve the burning, and I had to deal with major pain for most of the day. I no longer have to do this, and I am having absolutely no burning afterward. The first time we had sex I was very sore for the entire day following, but the last two times it has only been sore for a little bit. And the soreness I have now is absolutely nothing compared to what it used to be. I can't say how glad I am that the burning is gone. Sex is now a completely different experience.

I am also pretty much pain free with sitting, which is the post-surgery pain that had stuck with me for a long time. I was afraid that I would have pain with sitting for the rest of my life, which was upsetting since I had not had pain with it prior to the surgery. However, I now very rarely notice any pain at all when sitting.

Overall, I can say that my surgery was completely worth it and I would do it again in a heartbeat. For those of you who are still suffering and considering surgery, don't be afraid of it. Cindy and the rest of you who are still having pain after surgery...I am so sorry that you are still going through pain. Please continue to fight, because I know I fought for a long time before having any relief and went through countless failed tests and useless treatments. Continue to be an advocate for yourself and your health, because you are worth it!

I

I did the injections that were a combination of lidocaine (to numb things) and steroids (as an anti-inflammatory). The idea behind the injections was to "break the cycle" so to speak. It was supposed to relieve the pain and inflammation that usually occurs in that area and give your body a chance to reset the pathway to feel what a normal nerve would feel in that area. For me, they did absolutely nothing, and as you said they hurt like crazy. I even did a six week series of four seperate injections a week before I gave up because I still hoped for improvement.

Agnes is right about the use of some type of tricyclic antidepressant. They are used to help control various types of nerve pain (like the pain people can have in their nerves after shingles) and the idea is that they will control the nerve pain in the vestibular area.

I also took amitryptilene, it was actually the first treatment I tried. I hated it because I had really bad dry mouth while I took it. It also did absolutely nothing for me to improve the pain. I think I took the amitrptilene for about six months before I gave up on it.

So, neither treatment worked at all for me but I have read research in which they have helped some people. That is one of the problems with VVS - there are so many treatments that will cause improvement for some patients but not the majority. There are no treatments that are consistently successful in the majority of patients who take them. But it is hard to turn down a treatment you can try when there is that small chance that it can significantly improve your pain.

I did almost every treatment under the sun before I tried surgery, and had no appreciable improvement with any of them at all.

Sorry it has been awhile since I have been able to get on and give an update. Things are still up and down for me. I was actually doing really well for a couple weeks and am now having more pain again.

I had an appt with my GYN at 7 1/2 wks post-op and it went great. I had the Q-tip diagnostic test that I am sure we are all painfully familiar with. I had hardly any pain at all!! I actually made my doctor do it twice cause I was convinced that he just hadn't touched the right places with the Q-tip. The second time went just as well. There were a few areas that I would define as "uncomfortable" but not necessarily painful, whereas before it felt like they were touching me with a hot knife when they did the Q-tip. He also verified that all my stitches had dissolved and the incision was healing well. This was very exciting to me, and I got the green light to start using dilators.

The first time I was very nervous, but I started with a very small dilator. I actually only used the small for a few days cause it really wasn't very difficult. I did have pain when I moved up to the medium dilator. The first time it took me a few minutes to get it in because I had to do it very slowly. However, once it was in it wasn't that bad. I have been using the medium dilator for about a week now and it's easier to get it in every time. I even started thinking about taking the plunge and trying sex for the first time in several months.

So, that is the good news. The bad news is that I am having quite a bit of pain again, mostly with sitting. BTW, Lisa, I had very minimal pain with sitting before the surgery and a lot of pain after (especially for the first 6-7 weeks) so I would be fairly optimistic that the pain with sitting is only from the surgery and should get better.

I had noticed a very major improvement between seven and nine post-op, and I was so excited and told everyone I was feeling great and how great it all was. I could sit down, bend over, squat, etc. without pain. The only thing that hurt was leaning forward when sitting, which was still fairly mild. I had my period week ten and I don't know if that is what spurred this relapse or not. I hope not, since it is unfortunately something that will continue to come back.

It had come up earlier from someone whether or not others had pain before their period. Before the surgery, I had severe pain a few days before each period. It got progressively worse and the last few months before the surgery I almost had to call in sick to work those days because I was in so much pain with it. The pain with this period was extremely mild and I thought for sure I was out of the woods. My period was not too bad, and I was even able to wear a tampon for the heavier days which was very exciting! I haven't been able to wear a tampon for a couple years.

I started noticing the pain coming back toward the end of my period, and it has now been about a week and I am still having pain, especially with sitting. I also have had a few bouts of very severe pain that lasts anywhere from 30 min to an hour. Has anyone else had this experience of getting much better then getting worse again?

I am trying to stay positive but am really bummed that it got worse again. It is by all means still better than before the surgery, but now that I got a small taste of having very little pain I want that back again!! I don't want to have pain with sitting for the rest of my life! And I really want to try having sex but I am too chicken to try it now that I am having pain. I am afraid that if I try too soon and still have a lot of pain then it will be too much of an emotional setback and I will be even more afraid of intimacy and feel like a failure.

I don't know what to do now. I am trying to be patient and stay positive, but even now as I am writing this post I am laying on the couch feeling intermitten stabbing pain at the opening of the vagina. Why is this happening?!?! I just want to get better and stay better. Life is so complicated sometimes...

Agnes,

Welcome. I am sorry to hear that you are going through so much pain right now. I know it can be so frustrating to have pain and try so many different treatments to no avail.

For me, I did have pain around the urethra but it wasn't too severe. I would occasionally have burning when I would pee, kind of like I was getting a bladder infection. It would resolve as the urine would flow, but there was usually still a certain amt of discomfort the whole time and it would feel slightly tender when I would wipe. However, this was not every time I would go, only sometimes. I have not really noticed this pain since I have had the surgery.

I did not ever experience the pins and needles feeling you described or the cramping type pain at the opening of the vagina. Mine was always a stabbing/burning/raw feeling. It was always worse with things like jeans, tampons, etc but it was also sometimes completely random.

I never tried interferon injections cause my doctor did not think it would help me. I did try injections of a steroid and lidocaine combo that was supposed to reset the nerve pain but there was absolutely no improvement after six weeks so I stopped. My pain was more similar to Cindy's, cause mostly by having too many nerve endings. It sounds like yours is more related to the skin itself being inflamed.
There is definitely a possibility that something like the interferon would help more for you, since yours sounds like it might be more of an inflammatory process.

I did go to one doctor at the Mayo Clinic who seemed to believe all VVS pain was caused by skin inflammation and sensitivity. He put me on an extensive regimen of different skin products, had to change all my underwear, laundry soap, etc. I tried all of this for several weeks and got absolutely no relief. However, I did not feel like my pain was being cause by the skin being too sensitive, it was because of the nerves being oversensitive.

To me it sounds like your pain is different than mine was, but the surgery has helped me. I would definitely continue to pursue more treatment options, including the possibility of surgery, because you should not have to live with the amount of pain that you are in.

Cindy, you are much braver than I am! There is no way I would be even thinking about having sex! I am very nervous and anxious to try it for the first time, but that won't be for a while. My doctor told me to wait until I can progress through all the dilators (S, M, L) and I am supposed to use each size for 3 wks before I move to the next one. So it will probably still be another couple months.

I wish I could say I was eager to try it but I am not. I am still suffering from the emotional fear of all things intimate. My poor dear husband has suffered more than he should have to from this because there is absolutely no "activity" in our lives. Even though it would be possible to do other things beside intercourse, I still avoid all of it like the plague. I have been trying to work on the emotional healing, but I hardly know where to start or what to do. But, I am desperate to make some progress in that area because if I don't then it won't matter whether I still have pain or not because I am still too afraid of everything! I just wish I could have a sex drive. That is one thing that I so desperately feel like I am lacking, and I feel robbed of that part of my life. I should be able to want to have sex with my husband!!

As for everything else, I am hanging in there (sometimes by a thread). My first night at work was Monday. I actually did really good, and was pleasantly surprised to find myself bending over without pain several times! Unfortunately, the second night was not good.

It was probably because I was picking at things in the shower before work, which was not a good idea. There was just one spot really bothering me and when I touched there it felt like there was a stitch. I couldn't see it, but I tried to get it out. I don't know if there was just not a stitch or if it still in there too tight, but I had no success. I paid for it big time at work.

I ended up miserable the entire night, almost in tears a few times. I wasn't able to hide it very well either, because several coworkers commented on the fact that I was walking a little funny and asked if I was OK. One saw me try to sit down at the desk and asked if I needed help or needed to go home. By the time I got home this morning I was so miserable. I took two Percocet and used an ice pack but was still in so much pain I could not sleep. I ended up awake most the day because of the pain, and unfurtunately I had to call in sick tonight because of it.

It definitely feels like a setback and I am very disappointed. I am also frustrated because I am trying not to even look to see if there is still a stitch, and I definitely don't want to touch again because that hurt way too much. I was supposed to have an appt on Friday with my doctor, but it got moved to next Wed. I guess I will try to leave well enough alone until then. I am just afraid of a hidden stitch leaving scar tissue that makes things worse.

Oh the pain of it all, on so many different levels...

As I had promised, I wanted to post my advice to all of you who may be considering surgery or have your surgery coming up. I am warning you, this is very long and detailed. I just really wanted something like this when I was getting ready for surgery and couldn’t find it, so I wanted to take the time to give everyone all the advice I had. So, here goes…

Start early – The entire planning process for my surgery took several months. In order to get everything organized it takes a lot of time and advance planning.
Find a good doctor – I know this is easier said than done. It took me a lot of time to find someone who is experienced at doing a vestibulectomy. There was no one in the state of NM, and while it was not optimal to have to travel, it was worth it. And if anyone needs recommendations for a wonderful doctor in Salt Lake City, UT then email me.

Plan time off work – One of my biggest questions when planning the surgery was how much time I needed to take off work. Of course, this depends a lot on what type of work you do. I am a labor and delivery nurse who works 12 hour shifts. It is a fairly physically intense job, so I was worried about going back too soon. My advice would be to talk to your boss about flexibility. I planned six weeks off for recovery, with the provision that I could add myself to the schedule after four weeks if I felt well enough. I can tell you that I personally am definitely going to take the full six weeks. I am going back to work on Monday, so we will see then if six weeks was long enough.

Length of Stay and Travel – If you have to travel to have surgery, as I think many people do, plan it carefully. I wanted to make sure I gave myself enough time to recover before making the return trip, but for obvious reasons I wanted to get home ASAP. After much debate, I planned my entire trip to be two weeks. I also drove to save money (with the help of my parents). I got there on Thursday, my initial consult was on Friday and the surgery was on Monday. This gave me a total of 10 days to recover before having to make it home. I have heard varying time frames for when people were able to travel home. Fortunately, I have a Yukon and I was able to make a bed in the back and lay down while my parents drove the 11 hours home. If I was not able to do this, I wouldn’t have made it home. There is no possible way I could have flown at 10 days out. I was still unable to sit for 15 minutes with plenty of room, much less sit for two hours on a cramped airplane. I also would not have been able to sit up on the seat of the car. So, if your only option is to fly or drive without laying down, I would personally recommend more than 10 days to recover. I probably wouldn’t have been able to make it home by flying or sitting up for at least 14 days after my surgery.

Hotel – If you are on a budget (who isn’t???) then I would recommend looking for an extended stay hotel with weekly rates. A lot of places will have a variety of hotels with weekly rates of $150-$250 which comes out to a lot less than the $50 to $100 per night that you might pay at a regular hotel. My other piece of advice would be to find a place with a kitchen. Go grocery shopping before your surgery and stock up your hotel room. This saves a ton of money over going out all the time and is very convenient, since you obviously won’t be able to go out for dinner anytime soon. Ours also had a laundry which was convenient so we didn’t have to take two weeks worth of clothes. Also, one thing that other people had mentioned as key was location of the hotel. They paid more to have a hotel near the hospital. For me, this didn’t make sense. My hotel was a 15-20 minute drive from the doctor and it worked fine. I didn’t have any problem with the distance and it was more important for me to find something for less expensive. You should only have to make a few trips to the doctor so it isn’t a big deal.

Start the insurance process early – Depending on your insurance and coverage, who knows how much they will or will not cover. But, fight for every dime you can get! Make sure you start this process very early though, because it usually takes forever. In my case, I made the first phone calls in the beginning of November and didn’t officially get all the I’s dotted and t’s crossed until a week before my surgery in the end of January. This was really stressful! Make sure you stay on top of them. I would say I made at least 15 phone calls between my doctor, insurance, my surgeon, etc. Don’t trust that they are getting anything done because it took me several calls to even get the paperwork from place to place. The more you pester them (politely) the faster it will get done usually!

Take your mom (or other helper person) – Of course, the mom thing doesn’t work for everyone. But, you will definitely need someone to help you do pretty much everything during your immediate recovery. Personally, the best thing in the world was to have my mom there. She is an amazing person and the most compassionate and caring mother that there is. Be prepared though, you will not be able to get up much for at least the first week. God bless my mother, she brought me food, water, pain meds, entertainment, etc. 24 hours a day. Remember, if you do too much too soon then you will delay your whole recovery and may cause more long term problems.

What to take – Pack lots of entertainment...I took my computer, books, magazines, a coloring book, movies, TV, etc. You will spend a lot of time in bed and if you get bored you will focus more on the pain and feel miserable. Also, don’t forget to take lots of pads. I took a bunch of big pads and some waterproof pads for the bed, just in case so I wouldn’t bleed on the sheets. I would also recommend buying some cheap really comfortable underwear if you don’t have some already. You are going to want nice stretchy granny panties so that you have plenty of room for ice packs and to “let it all hang out.” And I wore nothing but comfy pajamas the whole time. You are going to want lots of these.

Ice packs – They are a lifesaver!! I tried several varieties and each had their pros and cons. A lot of people on here are a fan of the condom ice pack. I did try these but had to use a long sock to put them in so there were a couple layers of fabric between me and the ice. They were OK for me but not great. I also used diapers. If you tear open one end of the diaper it makes a convenient pouch to put ice in. This is nice because it is fairly soft against your skin and it absorbs the moisture as the ice melts. Once you fill it with ice just fold the torn end over and fasten with the tabs (obviously you would want the tabs on the side away from you so it doesn’t touch your stitches). I also used the standard medical ice pack from the hospital. It was OK, but it was a little too long so it iced me all the way from front to the way back which was overkill. Whatever kind you use, make sure you keep them on. They help a lot with the pain and burning, and they will keep the swelling down. Increased swelling will make it harder for your body to heal so you want to avoid it.

Sitz baths – I personally really didn’t like these but I did them because the doctor told me to. The warm water helps increase blood flow to the area and encourage healing. The “sitz” part is just Epsom salts, available at almost any store, and add it as per the directions. The only time I found them very relieving was after trying to have a bowel movement – it helped a lot with the burning. The rest of the time they didn’t do anything for the pain, but I still did them faithfully 2-3 times a day to try to encourage healing.

Don’t get constipated!! – I can’t stress this one enough. I did not think this would be a problem for me at all, since I’ve never been constipated in my life. However, it was almost debilitating. My first recommendation would be to start taking stool softeners and/or laxatives 1-2 days BEFORE your surgery (of course, get your MD’s advice on this). All these meds take a few days to start working, so if you wait until after the surgery to start them it may be too late. If you are thinking that you’d rather not do this because it might make things too soft if you start before your surgery, you might be wrong. I would have much rather gone more often and had it be softer than what I was dealing with. And if you don’t think you will get constipated either - remember, you have several things working against you: pain meds make you constipated, bedrest makes you constipated, the fear of pain will hinder things, and more. I used Colace, Mirolax, Benefiber, prune juice, lots of water, suppositories, and an enema. Trust me, it’s not fun! Mine got so bad that I tore a few stitches trying to go to the bathroom which led to lots of pain, bleeding, and crying. Don’t let it happen to you!

What if you do get constipated – So, what if it still happens. When I was going through it I vowed I would put this on here. It is OK to do suppositories or an enema (I did talk to my MD about this too and he said it was OK). When I was trying to decide whether to do it, I was afraid that things would be too forceful after a suppository or enema and it would hurt worse. I was really wishing I knew if someone else had ever had success with one after their surgery. The suppository did nothing but the enema did work OK for me, and it made it way softer which caused much less pain. I wouldn’t by any means recommend it unless you have to because the whole thing in general isn’t much fun, but if you have to then go for it. It is totally worth it to make things softer.

Warm compress - One tip I really wanted to share is to use warm compresses! I thought of doing it because I am an L & D nurse and we use warm compresses on people’s perineum when they are having a baby. It helps with the stretching and the pain. So, when I was in excruciating pain trying to go to the bathroom, I thought, “what the heck.” It worked wonders!! I used baby wipes with hot water and just held it against my perineum to support things. It helped a ton to have the warmth and the support. I would highly recommend it when you are trying to have a bowel movement.

Pain meds – Don’t try to be a hero! You had surgery, you are going to have pain. Some people don’t like taking medication so they try to hold off or take as little pain medicine as possible. This is not a good idea! Speaking from my medical background, I can tell you that studies prove that the longer you try to wait to take pain meds, the more pain you are in, the more meds you have to take when you finally decide to take some, and the longer it will take to heal. I took my meds around the clock for almost the first two weeks. I set my alarm and would wake up to take them. This really helped keep my pain at a manageable level and prevented me from waking up in a terrible amount of pain. I continued taking pain meds every day or two for about the first three weeks, and I still take Ibuprofen about 3 or 4 times a week.

Do not overdo it – Make sure that your support person who is there keeps an eye on you. My mom was very frequently chasing me back to bed and admonishing me for trying to bend over and pick something up. It may be frustrating at the time to not be able to do anything, but it is truly not worth the risk of tearing stitches or causing problems so that you can get up and do stuff for yourself. I tore a few stitches (not from getting up, from trying to have a bowel movement) and it was miserable. You don’t want to go there! I was literally in bed almost all day every day for the first week. At the end of the first week I ventured out a few times to walk around the hotel (mostly just to try to alleviate the constipation) but that was it. I did get the bright idea to go to Walgreens with my mom at about 6 or 7 days out and it was a horrible idea. Take some homey things, make your hotel room comfortable, and plan to be in it 24/7 for at least the first week.

Give it time – If any of you have read many of the posts on this board then you know that there will be ups and downs. From day one to day ??? you will feel good one day and terrible the next. This can go on for months. Just know that you will not heal overnight and expect an occasional setback.

You can do it – If you have taken the time to read this extremely long post then you are obviously thinking seriously about having surgery. I say – go for it!! If you have already tried everything under the sun with no relief and your doctor thinks it’s a good idea, then you should do it. It was a long and difficult journey for me to get to the point of having surgery, but I am glad I did it. I am only 4 ½ weeks out so I still don’t know if it was successful, but at this point I do not regret doing it. It is a big decision but your sanity and sex life are worth it. Living the rest of your life with the pain that we have all been in is not good for you physically or emotionally, and this may be your chance to move beyond that.

Well, that is all I can think of at this point. Kudos to all of you who took the time to read all this - like I said, it is long post! I would encourage any other veterans out there to add their tips. I was desperate for stuff like this when I was planning my surgery and didn’t feel like there was enough out there, so I wanted to do it. Maybe we can keep people from making any of the same mistakes we did!

Honeyblue, I know it's easy for me to say, but try not to panic! I have heard of a lot of people who are not totally satisfied with the looks of things after their surgery, but maybe it is something you can get fixed later (much later, after you have fully healed). I know that sometimes small repairs like that can be done in the office with just some lidocaine and one or two stitches. But, if this surgery has improved your pain then it may be worth living with the skin flap.

I can understand being frustrated though. Especially after two surgeries - I couldn't imagine going through this again. It does sound like you did everything you should and may have had more than your fair share of torn stitches. If it has to be repaired, maybe you could talk to the doctor about using a different kind of stitch, or maybe suturing it more closely to prevent tearing. And maybe when you see the doctor he will have an even better solution. Although I know it's hard to wait for over a week.

I do know someone who had a weird skin split in her labia, and she got it repaired when she was having her second baby and already had an epidural. That way she didn't have to make a special event out of it and she didn't notice much difference with the pain compared to when she had her first baby. I am sure a baby is the last thing on your mind right now, but it's just a thought. Hang in there, you are doing a whole lot more to take of your body than I am. Keep it up!

Cindy, I had no idea you tried to go back to work so soon! I never would have been able to do anything at two weeks. I am amazed you were even able to last at all - I wouldn't have even made it into the car at that point!

Thanks for the suggestions for going back to work. Unfortunately, I work a night shift job, so I have a very difficult sleeping schedule as it is. I have already tried about every drug under the sun and not much works. But, I am pretty used to not sleeping. I am sure I will be hurting a little bit though, so I will probably end up with at least Ibuprofen, if not a Percocet here and there.

However, one really great thing about my job is that I wear scrubs so I won't have to worry about how to handle dressing appropriately for work without hurting. Scrubs are about as close to pajamas as you can get so that is good.

I am doing OK. I had a pretty rough time this weekend but I think I overdid it. The day after I wore jeans I was in bed all day. I think it was a combo of jeans, spending several hours out and about, and the fact that I have been refinishing an armoire which has involved a lot of lifting, bending, squatting, etc. I was better the next day though, and today has been pretty good. Of course, who knows what tomorrow will bring, hopefully it will be good!

I am now 4 1/2 weeks out of my surgery. On Monday it will be 5 weeks. It has been an interesting experience to say the least, not at all what I would have expected. A lot of pain, a lot of bedrest, and a lot of recovery.

I am feeling OK right now, but I wore jeans for the first time today and I think I am paying for it a little bit. It was not as bad as I expected, and nice to feel like I didn't look like I had just crawled out of bed in my sweat pants. The worst part was when I sat down on the floor to tie my shoes. Big mistake, I should've used another method cause sitting on the floor in jeans was not wise. Other than that though, there was not much pain while I was wearing them. I am extra sore tonight, but who knows if it is because of the jeans or just because. The pain seems so sporradic that I have given up thinking I can pinpoint what makes it better or worse.

One of the parts that I hate is that sometimes the pain will catch me off guard. I can just be sitting having a conversation with someone, and all of a sudden it feels like someone is stabbing me in the crotch. Not only does it hurt, but it startles me! Since it is considered by most to be socially unacceptable to grab between your legs and scream, the sudden stabbing pain can be a challenge. At best I usually stop talking and make a face, which is always fun to make an excuse for ("Sorry, I thought I was going to sneeze" or "I just inhaled a fly" or whatever).

Considering I have just recently mastered the ability to sneeze or cough in public without putting my hand between my legs to support things, I am a little nervous that I will relapse when I go back to work on March 7th. I hope I don't have a coughing fit and instinctively reach down to support the area. Awkward! I had no idea it would be so uncomfortable to cough, sneeze, blow your nose, etc. but it is. Of course, now is nothing like it was the first two weeks after the surgery, but I still don't much enjoy the feeling of stretching and pressure that accompanies any of those things.

Such is the rollercoaster of life I suppose, for now I will just try to roll with it and hope that someday soon the pain goes away for good or the rollercoaster stops so I can get off and go have a hot dog.

Cindy, it is interesting to hear that the other doctor thinks you have IC. This could be good and bad at the same time. Bad in the sense that it involves a ridiculous diet and expensive meds, but good in the sense that maybe with proper treatment it will alleviate your pain.

I have heard that IC and vestibulitis can often go hand in hand. In fact, I had one doctor that thought I might have a mild case of IC and she gave me an RX for Elmiron as well, so I definitely understand the $$ issue cause it is very expensive. She did not talk to me about a special diet, but I had at one point looked into the low oxalate diet for the vestibulitis. I would have to agree that it might as well be called a "Water and Air Diet" because that is about all you are allowed to have. In the end, I didn't try a special diet or using the Elmiron either one, cause my GYN doctor said he really didn't think they would help, and I was more than happy not to do them.

I am sorry to hear that things are not improving as much as they could, but it sounds like between treating the IC and getting those last few stitches out maybe you will start to improve more. I have to commend you for continuing to seek treatment. I know that a lot of people just get so frustrated that they give up and refuse to ever go back to a doctor. I think it is very brave and the right thing to do to keep fighting the battle until you get some results. Every little step is a chance to get you closer to a pain free life.

As far as for me, I am doing OK. It is not too bad right now, mostly just having pain when I sit forward too far or bend over too fast. It is manageable, but I am certainly looking forward to when the pain goes away. I am supposed to start dilators in a few more weeks which should be interesting. Hopefully it isn't too bad.

Honeyblue, we haven't heard anything from you in a while. Any news? Are you getting better? Hope so, maybe that means we will all get better someday!

Hope everyone is hanging in there through this, it is tough but it will be worth it when we can all someday feel better!

Cindy, I am so sorry that things are still so touch and go with your recovery. It sounds like getting the stitches removed was a horrible experience for you!! Even though it was so painful, hopefully it will be for the better. It sounds like things are improving a little, and I have heard from a lot of people that things really start to turn around after stitches are out. I sure hope things continue to heal and your pain gets better.

I am glad that you are going to be able to see another doctor. Maybe he will have some new options that, in conjuction with the surgery, will continue to improve your pain. The other thing I would strongly suggest (if you have not already done so) would be to see a counselor. I was seeing a sexual therapist for a very long time and it took several months of counseling and medication to get me through my depression. Even if it is not someone who specifically deals with sexual issues, I think it would still be a good idea. The pain with this problem goes a long way from just the physical, it is an emotional hell. I felt like I was not a real woman and that my marriage was going to fall apart because I couldn't do what a wife is supposed to do. I still have to take meds for depression, and there are certainly days when I still feel that way in spite of everything. It was one of the hardest things I have ever done to get counseling and start depression meds but it was extremely important. Thanks goodness my husband is so patient and supportive.

As for me, things are going OK today. I was able to go out to a restaurant a few times last week, and I was able to go to church today. It is nice to finally get out and do things that I enjoy. My pain definitely comes and goes, and I have a little way to go still. As honeyblue said, it is three steps forward, two steps back. Hopefully with more time we will all continue to get better!

I was just wondering if anyone has any info about what is removed during a full vestibulectomy that is NOT removed during a partial or modified vestibulectomy. I think I am having one of those down times today. Yesterday and today I have had quite a bit more pain, difficulty sitting down or bending, and have had to take a Percocet (I had been completely off pain meds for over a week!).

Tonight I was looking at things and tried to touch certain areas to pinpoint exactly what was hurting. I even tried very gently inserting just the tip of my finger into the vagina. It definitely still hurts. Mostly the skin just feels tight and sore. But, my biggest area of concern is inside the labia minora all around the urethra. It looks like there are two stitches there still, right to each side of the urethra. When I was touching the skin in this area on the inside of the labia, it burned extremely bad. The doctors had commented on this area being red before the surgery, but I never really had much pain there that I know of. Of course, there is always the distinct possibility that the pain was there and has been mostly masked by the pain in the lower area. However, the burning was so bad tonight that I had to take a long bath and now I am on the couch with an ice pack. I was barely even touching the area at all, so I can imagine what sex might do to it.

Mostly, I was just wondering if this area is removed during a full vestibulectomy. I am having horrible thoughts of having to repeat this whole process and take the rest of it. I only had a simple partial vestibulectomy, because that is all the doctor felt was necessary. I researched some but couldn't find a lot of info on exactly what the difference is between a partial vs. full vestibulectomy. What if I have to have more removed?? I don't want to have to do this again. I just want to have a normal, wonderful, healthy sex life. As I myself said before, this is all a rollercoaster. I know it will get better again, but with the ups I suppose there have to be downs. I am just feeling anxious today like some of the rest of you have been - did it work, was it enough, will I ever be pain free????

Cindy,

I think it is a good idea for you to take more time off work. It definitely sounds like you need the time to heal.

I was wondering if you have tried lidocaine gel for the burning sensation. It would have to be prescribed from your MD, but it helped me some with pain immediately after the surgery. However, it sounds like maybe it is just irritated skin that needs time to heal, so hopefully the petroleum jelly will also help protect and soothe it.

Also, as far as the muscle pain, have you considered physical therapy? I also have some muscle pain and my doctor said I might continue to have pain with intercourse due to the muscles. He is hoping it will heal on its own, but if not then he suggested physical therapy. I have heard good and bad about PT and about things such as TENS units. If you get one, I'd love to hear how it works. I won't know for a while how much muscle pain I still have, but if I need to treat then I'd like to consider all my options.

Ms Cindy and HoneyBlue (and everyone else out there),

I want to encourage both of you! I am a week or two behind both of you in recovery - today is exactly three weeks from my surgery. Sounds like all of us have had ups and downs. I am feeling pretty good today but I was in a very desperate place the first week or two after surgery, and I am sure I will get to the down part again. However, I know that having a place to talk about my problems has made it so much easier to cope so far!

I want both of you to remember that you are not the only ones out there. I am right there with you, along with thousands of other women. Although it may not feel like it now, we are all amazing, strong, blessed, beautiful, capable, worthwhile women. This condition is obviously not for the faint of heart, and although we may sometimes feel faint (which is completely understandable), we will get through this. It was an extremely brave decision to even seek treatment for this problem. We have all seen several doctors and gone through lots of treatments. Now we have had this surgery and, regardless of the outcome, we know that none of us have been afraid to fight. That in itself shows how strong we are.

Although things may seem bad right now, take it one day at a time. Remember, "This too shall pass..." It is a simple phrase that has gotten me through more tough times than I can count. No matter what, we WILL get through this. When I find myself desperate and in need of encouragement, I look to scriptures that have given me strength in times that I was alone and afraid. I would be happy to share those if you would like.

Sometimes it just doesn't seem easy, fair, or even possible to deal with this. Why us? Why can't we just be healthy? There is no simple answer, there isn't really even a complicated answer. The only way to sum it up is...wait for it...IT SUCKS! So, hang in there. Please feel free to email me if you want to talk, I would be happy to wallow in your sorrows and rejoice in your success.

PaininDC,

Thanks for the concern! I have been meaning to get on here and update things. I do finally have some good news!

I am still having a little bit of pain, but not nearly as bad. I am FINALLY off the pain meds. I am only taking Percocet once a day and an occasional Ibuprofen. I am able to sit up now for short periods, which is fantastic. I was extremely tired of not being able to eat sitting up, and my hips were hurting pretty bad from lying down all the time. I even made a quick trip to the store by myself today which was quite exciting!

I am still taking it easy as much as possible because I don't want to aggravate things again. On Tuesday I saw my doctor here in Albuquerque and he said everything looks good. That was the first time I got out of the house for any length of time, which was nice. Unfortunately, I had my mom take my grocery shopping afterward and I was in pretty bad shape by the time we were done. I felt better with a Percocet and a little rest though. Maybe a doctor's appt and Wal Mart in one day was a little much.

So, overall everything seems to finally be on the upswing - thank goodness!! When I have a few minutes I will get on here and make a posting with some veteran advice for anyone who has surgery in their future! I definitely learned some things the hard way and would be happy to share my tricks of the trade.

Anna

Thank you Ms Cindy for your update. It definitely helps to know how things are going for someone who is close to me in the recovery period. Sounds like things are getting better for you, hope you continue to heal well. It gives me a light at the end of the tunnel - maybe I will start getting better soon too.

Unfortunately, I feel like I am not healing well at all. It seems like every day I have more pain. Yesterday was terrible because I was running low on pain meds and the doctor on call would not give me any more and was being a complete jerk! I ended up having to call my doctor from NM and he called in a Vicodin RX for me...not quite as good as Percocet but you can't call in an RX for that.

The best advice I can give everyone out there is DON'T get constipated!!!! It is horrible. I think that is part of what has caused me so many problems. I tore a stitch a few days ago trying to go to the bathroom (even though I was barely straining at all) and it is still extremely hard and painful to go, even though I am now on four different stool softeners. It is so frustrating that I am having this complication because I have never been constipated in my life! I really did not foresee this being an issue at all.

In addition to my torn stitch, I have a lovely expanding hematoma now (basically a really bad bruise). I am on day six and still in so much pain. Everything still looks terrible down there. It is not infected or anything, thank god, but it is so bruised and swollen everywhere. It has been way more painful than I anticipated. I thought things would at least be getting better by now instead of worse.

I feel like I have been behaving well as far as my recovery. I have done nothing but lay in bed this entire time. My mom is here with me and she does everything for me - she makes all my food and brings it to me in bed, she positions me with all my pillows, she makes me ice packs, brings me my pain meds, she is amazing!!! I haven't even really sat up yet, except for a few minutes in a chair. So I don't feel like the pain is because I have overdone it. Oh well, sometimes things go wrong no matter what you do.

I don't want to scare any of you who are thinking of having surgery though. I can still say, even in the midst of all this, that I would do it over again if it turns out to work. Now if it doesn't work then I will be totally devestated, cause this is a lot of pain to go through if it is for nothing. But, I am just believing that I will be healed and someday my husband and I will have an amazingly satisfying sex life.

Hope things are better for the rest of you. Hopefully I will have a wonderful update to share soon, but until then thank you for letting me vent!

Day and four and counting...today has not been great. It started out with a lot of pain and some nausea. The nausea got a little better but the pain didn't go away much, even with two Percocet. Fortunately I was able to sleep some.

I called the doctor's office this morning because I was a little concerned about my bleeding. How much did everyone else bleed? It is not like I am bleeding terribly heavily, but it was very little yesterday and now is much heavier today. She said it sounded ok, to just keep up with the sitz baths (which I hate doing).

I was also wondering how long everyone used ice packs for? I don't want to stop using them because they feel good, but I am afraid this will prolong the healing. Part of the reason behind doing sitz baths is to increase blood flow to the area and promote healing, and the ice pack sort of does the opposite - decreases blood flow to the area. I am not ready to completely give up my ice because it really helps, but I also want it to heal.

My other problem today is going to the bathroom - or the lack thereof. Several people on here had advised to take stool softeners but I did not do it because I did not think I would have a problem. I have never been constipated in my life, so why would I be now? That was not a good idea! I am fairly miserable and have been taking the stool softeners and drinking a ton of water but still no success. It hurts too bad to strain at all, and it makes me nervous cause every time I try I start bleeding more. I don't think I have torn any stitches or anything, but I most definitely do not want to.

So, today has been a bit of a rough one. I am hoping tomorrow is better and less painful. I suppose I will just have to wait and see...

He said it would probably be about 2-3 weeks before I was feeling great again. Just to be on the safe side, I took a full six weeks off of work. I may be able to go back earlier than that, but I am a Labor and Delivery nurse which can be pretty physically demanding so I want to be careful not to rush it.

I have heard so many different things about recovery time. Usually 2-4 weeks seems to be the popular answer. I hope that is true in your case and in mine, cause I would love to not be so uncomfortable.

For me so far the 2nd day was the worst. I am just starting out on the 3rd day and I haven't moved much yet, so I don't know how I will feel later. I was in quite a bit of pain last night because I think I overdid things a bit trying to sit up for quite a while.

The thing I am most nervous about now is going to the bathroom. I am really dreading it because even things like coughing or sneezing put a ton of pressure down there and are fairly uncomfortable, so I can imagine how good it is going to feel to go to the bathroom. But, it is a part of life and I am just going to have to tough it out and do it.

I hope your recovery continues to go well. I will keep posting any exciting updates.

Anna

I did not have the complete, I had a parital vestibulectomy with vaginal advancement. He did not do the complete because he did say it takes longer to heal and he did not really think it was necessary.

As for the anesthesia, they actually did not use real breathing tube. They used something called a laryngeal mask airway (you should google it so you can see a picture - it looks like some type of torture device but it works). As a nurse, I had to ask the anesthesiolgist why they use an LMA instread of regular breathing tube. Where I work, an LMA is considered a last resort airway for someone who they cannot get a breathing tube in for some reason.

The logic behing the LMA is that they don't have to use nearly as many drugs for the anesthesia. Apparently your body reacts better with the LMA so they do not have to paralyze you like the would with a breathing tube. The paralytics can make you feel pretty crummy after you wake up because your muscles get really sore. Also, they don't have to use inhaled gas with the LMA like they do with the breathing tube. This is good because the inhaled gas tends to cause a lot more nausea. Of course there are circumstances in which they cannot use the LMA (obese patients, people with severe asthma or severe heartburn, misc things like that).

I had never had general anesthesia either so I was certaintly nervous about that part and it actually went totally fine. The give you some nice drugs when you get into the OR that make you forget everything (it's called Versed) so I remember laying down on the table for about two minutes then waking up in the recovery room on a stretcher. It is a very weird feeling but I think I would just as soon not remember much in the OR.

My recovery is still going OK. My first day (yesterday) I felt really good. In fact my mom kept chasing me back to bed cause I kept getting up and walking around the room to get stuff. She was right though, cause I have heard too many horror stories about overdoing it when you feel good then all of a sudden you are in very bad shape and hurt for a lot longer.

Today I am definitely more sore. I ventured to look at it, which I was a little nervous about because some people say it looks really weird. Other than some swelling and a lot of bruising, it looks fine to me. Of course it is still kind of hard to tell for sure, but it was better than I thought it would look. I am sure I will go through more pain meds today and I will be very diligent about staying in bed. I am pretty OK laying down or standing up, but sitting down is almost impossible right now. And getting from the laying to standing and back to laying is a little challenging. At first I kept forgetting that I had to be very careful moving and I could certainly feel the stitches pull a little. But as long as I go slow and pay attention it isn't too bad.

The only other weird thing I am having trouble with is bending down (like to pull my pants up after going to the bathroom, or if drop something on the floor). When I bend it just feels like there is SOOO much pressure and a lot more pain. Thank god for my wonderful mom who is helping with everything. Who would have thought at the age of 27 that my mom would have to go back to helping me get dressed! Oh well, I am just so blessed to have her here to help me with everything.

I will keep updating as things go along. I am hoping the pain doesn't get too bad cause I am one serious wimp when it comes to pain. But, I will do whatever I have to to tough it out. Good luck to those of you who are starting to plan your surgery, and a speedy recovery to those of us who are done!

Anna

PaininDC,

I just read your first post - welcome. I am happy that you found this place, it is such a huge relief to be able to talk frankly and ask questions over others who have the same pain. Also, it is much easier to get the real story on the surgery.

I would definitely recommend for you to have it, especially if you had already tried lots of other treatments. Of course, I am only about 7 hours post-op so I can't say much about the outcome, but the surgery was so much better than I was expecting, and I am still having almost no pain at all. If this works it will be 1,000% worth it.

As far as other treatments, I had tried antidepressants, antiseizure meds (both topical and oral), estrace cream, lidocaine cream, lidocaine/steroid injections for 8 weeks, a special skin care regimen involving all different soaps and stuff, and a few other things. None of these gave me any relief at all. I never did try the physical therapy or biofeedback that some people do, because my doctor really did not feel like these would help. Since Dr Goldstein is one of the best dr's in the world on this matter, I would go with him. If he thinks surgery is your best option then I would do it.

I hope that answers a few of your questions. Good luck, and I hope you can get your husband on board. Maybe after he has a little time things will be better. As far as telling your kids, I have no advice on that one because I do not have any. I can imagine how that would be difficult, but hopefully you could come up with something that explains enough but not too much to scare them.

Let us know how it goes!

Anna

Becca,

I don't know if I am allowed to post the dr's name in here, I think there are rules against it. However, you (or whoever) can email through my profile and I would be more than happy to give you the name and info of the Dr here in Salt Lake who did my surgery. He was absolutely incredible!! Extremely polite, very patient, very caring, and has done over 400 vestibulectomies with a 90% overall success rate. The entire surgical staff was great including anesthesia, the pre-op nurses, OR nurses, post-op nurses. So, please feel free to email, or I can happily post it if that is OK - moderater, is that allowed?

To Everyone,

As far as the surgery it could not have gone better. I just had it 11:00 this morning and everything was great. To answer a few of the questions I had posed earlier...

I did have general anesthesia. It was not bad at all though. I did not have any problems with nausea which is what I was most afraid of. My dr does not do any kind of a shave or a foley catheter because he said these can both lead to the risk of infection. I just went to the bathroom right before we went back and I was fine.

The surgery itself only takes about 40 minutes. They give you some good drugs when you get in the OR and you don't really remember anything from there. Last I know I was breathing some oxygen then next thing I know I was waking up in the recovery room. They let me drink water as soon as I was back there (which was nice cause I was VERY thirsty). I was a little loopy feeling but not bad, and no pain at all. I stayed there for about 30 minutes then they let me go home. I was able to eat whatever I felt like right away and drink as much water as I wanted.

My throat is a little sore now from the breathing tube and I feel very dry cause they gave me a special anti-nausea patch called Scopalomine that stays on for 2-3 days and helps keep you from getting nauseated, but it tends to dry you out. It is worth it though not to get nauseated. As far as my other pain I am doing great. I have taken one Percocet and one Ibuprofen and have had almost no pain so far. Definitely have been doing the ice packs which feel totally amazing and just resting. The most discomfort I have had so far was when I had to pee the first couple of times. It burned a little but not terrible. Other than that I have felt great!

Now comes the hard part - waiting to see if it worked. Hopefully I will heal quickly and everything will be gone. I will keep updating how things are going. Hope all is well with everyone else!!

Anna

Less than a week to go and I am anxious to be there! I know this week will fly by between working, flying to Las Vegas for a funeral and flying back, then packing and taking off on a lovely 9 hr drive to Utah!

I do have a practical question for those of you who have already been through it. Do they shave you? If so, how much? I am just wondering if I should do anything before I go - shave, trim, wax?? Or should I just leave well enough alone?

Also, what kind of anesthesia did you have? I have heard some have general anesthesia and some just have local. I am just starting to think about all of the stuff that goes along with the surgery and I feel very unprepared.

I know every doctor does things different, so I wish I could have a manual that walks me through how my doctor does things.

And to Robyn, welcome to the site. I also was very excited when I found this board, it finally felt like I could talk to people who truly understand. I am so sorry that you are going through this, and I wish you the best of luck in your endeavors.

I hope you are able to find a good doctor. I was very fortunate in that I only went through two doctors. However, even a good doctor cannot always fix the problem. The best advice I can give you is DON'T GIVE UP! I have been through more medications than I can count, skin treatments, injections, counseling, diets, etc. etc. I am now at the last resort of surgery and I am desperately praying that it will work.

However, if you are like many of us and get to the last resort, don't be afraid to travel somewhere to go to a doctor who is experienced with the procedure. I am going to Utah from Albuquerque because no one in NM knows anything about a vestibulectomy.

Let us know how it goes.

Anna

Suffering,

I am scheduled for surgery on Jan 22, so I am write about where you were a few months ago. Nervous but also excited. I have been waiting for this so long and am very much hoping for relief.

I am sorry that you are still having pain. From what I have heard though, there is still hope for further recovery. Some people have had pain until a few months out but improve with more time to heal. Try to take it one day at a time and don't give up hope. Possibly you could have a small area that needs revised and could be done in the office like Jenn mentioned.

I can't tell you how wholeheartedly I agree with the sex drive problem. I am glad to hear that there are others suffering with this. My poor husband would be so thrilled to have ANY kind of physical contact, but I rarely get beyond kissing. And even that happens very infrequently. I have tried everything - we even went to a sexual therapist for almost a year. I finally gave up on that because we didn't seem to make any progress. I am desperately hoping that after the surgery is over and the pain is gone, I will be able to feel some type of sexual desire.

There are times that I wonder if my body even had a sex drive installed or if that part got left out. My pain has been a problem since before I ever had sex, and has gotten progressively worse over the years. Before I used to at least be able to tolerate sex, but now I can't even do that.

Thanks for letting me vent. Let us know how your recovery progresses. I am anxiously awaiting my surgery (two more short but very long weeks)! I will let you know how it goes!

Anna

I also have struggled with how/what/when to share with other people about the surgery. I have told a very select few friends at work, but I do not really intend to tell anyone else. Even though I am sure that most of them would be very understanding (especially since I am a nurse on labor and delivery - we are all quite familiar with the subject of vaginas), I don't really feel like they all need to know the details.

Because of that, I have been trying to come up with a "pseudosurgery" story because I know people at work will want to know why I am gone for 3-4 weeks. I haven't come up with anything yet, because I was trying to figure out what type surgery might cause the difficulty with standing, sitting, lifting, etc. I won't be able to have the surgery until sometime in January at the earliest, so I still have a little time.

As far as the boss, I am not too worried. I will get a letter from my doctor similar to what Colleen had, and I don't think they will ask too many questions. But just in case, I already checked into it. You don't have to give them details as long as you have proof through your doctor that it is legitimate.

My family is a different story. My mom and sister know everything, but of course my dad and brother do not. My sister already asked about how I was going to tell them and I am not sure. I know that they would be nothing but supportive and understanding, but it just isn't easy to bring up the subject of your vagina with your dad or brother.

So, good luck to you. I completely understand your dilemma. Let us know how it goes, and if I come up with anything brilliant I will pass it along.

-Anna

Denveritewithpain,

Good luck! I am so happy for you to be having the surgery! I hope that someday soon I am in your spot, just days away from my surgery.

I absolutely relate to feeling like "less of a woman" because of this. I too have struggled with thoughts of being inadequate as a wife and a woman, and I truly hope that someday those feelings will be gone. Although my husband remains very supportive, I live constantly with the fear that he will give up and go elsewhere for satisfaction of the needs I cannot meet.

I have an appointment with one more doctor on October 7th, then I hope to start planning my surgery (which will unfortunately have to wait until January due to work).

You will definitely be in my thoughts and prayers. Please let us know how it goes and what your recovery is like. Good luck!

Rosy,

Thanks for your response! So how long did you stay there after the surgery? I am afraid that trying to fly back to soon would be difficult, but I also don't want to stay and pay for a hotel any longer than I have to. Speaking of that, were you able to find anything as far as cheap housing? All the hotels I can find are pretty expensive if you are going to have to stay for a couple of weeks. Housing near the Mayo Clinic seems to be much cheaper so far than in Maryland, but maybe I just haven't found the right place yet.

I am glad that your recovery is going well and I hope you continue to heal quickly. Thanks again for your help!

I have recently found this message board and I am so relieved to read that there are others out there like me. In fact, I now realize how well off I am compared to some people. I have primary VVS (pain since the start of intercourse). Although my pain probably pales in comparison to what some of you are going through, it has made my life a mess and my sex life nonexistent. Although my husband has been very understanding, I desperately want to get this fixed.

I have spent hours reading all the old posts and have gotten so much good information. Thank you to all of you who have shared your stories. I do have a few questions though...

-I am from NM and am planning to go to either Dr. Goldstein or the Mayo Clinic in Minnesota (they do vestibulectomies there). Has anyone had any experience at the Mayo Clinic?
-How many seperate trips did you all have to make to see Dr Goldstein? Is it possible to do the pre-op and surgery in one visit, or do you have to make multiple trips to Maryland?
-Along the same lines, do you have to see Dr Goldstein specifically for the post-op appt? Does that involve another trip back there? If so, how long - 4 wks, 8wks, etc?? My GYN here has never done a vestibulectomy (that is why I am considering traveling to have it) but I would think he could check things out post-op.
-Does anyone have any idea about how many vestibulectomies Dr Goldstein does per year? I am desperately trying to decide between the Mayo Clinic and Goldstein (the Mayo Clinic would be less expensive for me) but I want to have the best possible chance at recovery. I am just trying to compare the two and decide which is best. If the Mayo Clinic does a comparable number to Dr Goldstein then I may go there. I would love to talk to anyone who has had experience at the Mayo Clinic if anyone is out there.

Those are my initial questions. I am so ready to have this done and just want to proceed, but I am drudging through through the reality of insurance, travel plans, time off work, etc. The sooner I can decide whether to go to Mayo or Goldstein the sooner I can get this over with. Thanks so much!! Congratulations to all of you who have had the surgery and are doing well, keep your chin up to all of you who are having a difficult recovery, and good luck to all of you like me who are hoping to have the surgery soon!