2 weeks until Surgery!

I am new to this whole forum-writing thing, but I have jumped on the bandwagon in the hopes that I may be able to help others.

I am 23 years old and have suffered from vestibulodynia for over 4 1/2 years. My boyfriend of over 5 years has been with me from the start of it all, and I could not be more thankful for him. We actually had a normal sexual relationship for about 6 months before symptoms started presenting themselves in Fall '07.

Basically, I had localized pain at about 6-8 o'clock during intercourse and upon touching the area. It took several months and doctors before I was correctly diagnosed. I was first given Lidocaine .05% to use before intercourse. 4 1/2 years later- I'm using 5% and it's still not always enough.

Needless to say, here are the treatments I have tried:

Lidocaine
topical estrogen
topical steroids
Amitriptyline
Nortriptyline
Gabapentin
Venlafaxin
Physical Therapy/Biofeedback


None have worked well, so I am opting for surgery.

On top of my initial pain, my pain began to spread over the years, presenting itself at 3 o'clock. For the past 2 years, I have also been battling with something called a fissure, or a reoccurring cut, that keeps opening itself at 11 o'clock during intercourse. The specialist I finally went to, Dr. Libby Edwards in Charlotte, NC, said that these are common with vestibulodynia, but they do not know the exact link. Nevertheless, the only option left for me was surgery, so I was referred to Dr. Bernard Taylor in Charlotte, NC. (Keep in mind, these doctors are 4+ hours from where I live.)

The surgeon examined me and determined that I was a good candidate for a vestibulectomy and hymenectomy (to remove left over hymen tissue that could contribute to the source of the nerve pain.) I am very anxious about the surgery, but am hopeful that it will be worth it in the end.

I am very open to talking about my issues, the surgery, etc, so PLEASE ask any and all questions an I'll try to keep you guys posted through my journey!

Thanks!

amtali

I completely understand everything you have written it is totally my story too. Except that I have had it for 9 years now (Im 41). Mine first presented when I was 3 months preganant with my first baby. I had been someone who suffered from thrush alot in my twenties so this might have something to do with it. Although it seem s more likely that the hormone change in my body with pregnancy must have kicked it off (I have had to have two cesears as the thought of childbirth terrified me with the level of pain I was experiencing). It is a terrible isolating condition. I have had great support from my husband but sex is impossible without the use of 2% lignocaine (dont whether this is the same as lidocaine or not), and then it is still very painful initially then seems to become ok during, but leaves me sore afterwards...an impossible situation. I am very interested to know how you get on with the surgery as I also have the small fissure as well that rips open every time and feels like someone is pouring lemon juice on a cut. The very best of luck!

Em, I hate that you've been dealing with this for so long. First of all, they make a 5%, but it's not always easy to get/find. I experience the soreness afterward as well, but the stronger dose helps more during. The lemon juice reference is dead on. Estrogen cream helps the fissure heal faster, but it will always keep happening. My gyno sent me to Dr. Libby Edwards, a derma/gyno specialist in Charlotte, NC. After trying 2 more medications with her, she referred me to Dr. Bernard Taylor, also in Charlotte. She said the best person to go to, however, is Dr. Hope Haefner at the University of Michigan, but that was too far away for me. Nevertheless, I was referred primarily because of the fissure. No amount of medication can fix that, so the only solution is surgery. Since my pain is localized to the vestibule, I was a good candidate for a vestibulectomy. My surgeon says that fissures are more common than people think when it coes to vulvodynia (especially vestibulodynia). I would definitely push to be referred to a surgeon because of your fissure. Let me know if you do!

amtali

Well surgery was Monday morning! I was extremely nervous, but things went phenomenally. Except for the uncomfortable catheter, my overnight stay at the hospital was pretty good. I am taking 1/4 of the dose for hydrocodone, so the pain is definitely more tolerable than I thought. I experience twinges of pain, but I really can't complain. I have just been laying low and laying on the couch or in bed for the past few days. Fingers crossed that this will all be worth it!

Let me know if you have any surgery or recovery questions!

amtali

I'm glad things went well for you! I wish you a speedy recovery and hope that this is the answer for you. Look forward to hearing about your progress x

Thanks Liz! I quickly got off the hydrocodone the doctor prescribed. I found that ice and tylenol worked just as well, without the drowsiness and constipation :-/. My doctor thought I would be able to sit soon after surgery, but that is not the case. As skilled as he is, he doesn't have female anatomy, so maybe he just doesn't quit get it lol. Nevertheless, ice and pillows have been my best friends. I have my 2 week post op in a week, so I might be able to come back with more information about my prolonged recovery. So far I am 1 week out of 12 total weeks of recovery. It's a long road ahead, but I hope it is the road to normalcy.

I met with my surgeon yesterday. I explained my frustration with not being able to sit when he thought I would be able to, but he did say that everyone is different and that it isn't surprising that I was unable to sit. The first week I pretty much laid on my back or side the entire time. The second week I was able to sit with my feet propped up and slouched back or with my legs to one side. Going into the third week now, my sutures are beginning to dissolve, which means the pinching, stabbing pain I experienced sometimes has decreased some. I was able to drive for the first time today. I had to sit on a pillow and lean my chair waaay back, but I did it! I iced afterward because I was a little sore from it, but again, the pain is much better. I think I will be able to sit up straight with my feet on the floor by the end of this week (week 3). At least, that's my goal. I see my doctor again in 6 weeks to discuss how to go about a normal lifestyle. Until then, I can slowly begin exercising and doing more physical activities, as long as they don't hurt. Woo hoo!

Well it sounds like you are definitely making progress which is fab. Keep taking it steady and I’m sure you will keep on improving. x

Yes definitely sounds like things are improving, its a big old thing for your body to recover from, so give it time. I know it must be frustrating, but just keep thinking it's a blip in your lifetime compared with hopefully years and years ahead of pain free fun!

I am fascinated to hear how you get on and whether this will fix the problem for you in the long run. I do hope so! Fingers are all firmly crossed for you, keep us updated!

A

So I have 4 desolvable stitches remaining, and they seem pretty content to stay where they are, ugh! I have minimal pain, and have been able to sit, which is nice! I only have pain if I tighten those muscles.

Today concerned me because I misfired twice (that's what I call the unprovoked twinge of pain I feel sometimes.) I'm kind of freaking out that this indicates the surgery did not 100% work, but I'm trying to convince myself that it could be the stitches (but it's not).

Man I hope this works!

Hello everyone!
For those of you who haven't read my other posts, I had a vestibulectomy back in June. Monday marks the 12 week mark, which my surgeon originally set as the "back to normal" week, meaning my bf of 5 1/2 years and I could try intercourse again. Needless to say, that will not be happening any time soon. I am not healing as well as one would have hoped. My stitches seemed to take a little longer to come out, and I am still experiencing pain between 10 o'clock and 2 o'clock when touching the area. I put off my period (on the pill) for my recovery and just now had my first one post-surgery. A light-sized tampon is somewhat irritating at this point, so I'm thinking it'll be a while before I can have a "normal" life. I visited my surgeon a month ago and he said that it does seem that I am healing slowly, and to wait at least 1 more additional month before trying anything. He said it's really just about listening to my body and knowing when I think it's the right time to try anything. So that means we're looking at a least a few more weeks of abstaining all activities with me.

I am really starting to think that I may never fully recover, but the pain is slightly different than my pain before surgery, and it's mostly in a different spot. Right now it's too hard to tell if my normal VV pain has gone away. I suppose only time (and self-exploration) will tell. I just wish my body would get with the program and heal already!

I'm an open book, so feel free to ask questions! That's why I joined this forum in the first place :-)!

Sorry to hear you are not where you hoped to be in 12 weeks, but its positive that the surgeon is not overly worried and the pain is different. Am sure it will keep on improving.

Have they suggested for you to do Physio to help your recovery? Or is it too soon for that?

Hang in there!

Ax

So, for those of you who have been following my story, I'm afraid I have no good news to share. After postponing the original "all healed" date 5 more weeks, I am sad to say that I still cannot have intercourse pain-free. Actually, I can't at all right now. I even tried with Lidocaine, which used to get me through it, and that didn't work at all. So not only am I back at square 1, but I've gone in reverse, with things worse off than they were before. I am clinging on to the notion that perhaps I am still not healed, but I am preparing myself to deal with the reality that the surgery did not work. At all.

That's all for now. Sorry for the somber tone.

I am so sorry to hear your news. I will pray that it gets better for you.
Thank your for keeping us posted.

Amtali I'm so sorry your surgery hasn't worked out for you but want to thank you for sharing your experience with all of us, I've seen some alarming conversations recently about how effective the surgery is and have to say I've never seen any evidence of this anywhere to back that up so a real life woman coming forward with information is extremely helpful and perhaps will prevent anyone thinking the surgery is a breeze with a 100% cure rate. I hope you find a treatment that helps you.

Hello amtali!

I was wondering if you could update us on how you are going? I sincerely hope things are better for you, but if not, that is also a valuable experience to tell.

I have been thinking of surgery lately, but I am a little terrified of it. I have provoked pain like yourself, during sex.

All the best wishes,

Tyger

I had the surgery and def.recommend it!