His and Her Health

I'll repeat part of my post: "I understand I'm probably the worst case scenario. I'm not saying surgery is for no one. But if you have doubts, if you have a sensitive system, if there are things you haven't tried... put it off. "

So I actually didn't say the surgery should never be done. I do think that if you've tried lots of other stuff, you have nothing besides pain in the vestibule with contact, and you have no signs of other issues or aren't known to have pain sensitivity, then you should do it. I'm not trying to scare EVERYONE-- but honestly I wish someone with similar symptoms to me had come along and scared me.

Amy, the best surgeon at this in the country, along with two other specialists, recommended I get the surgery. I weighed it carefully. I trusted MD's opinions over what you told me on a message board. I never would have guessed that was the wrong thing to do.

I haven't tried blocks because my pain is so diffuse in the pelvic region now it wouldn't really make sense.

I am worse than ever. Surgery was a horrible decision. I come here not to scare or depress people, but just to warn people who were like me pre-surgery. I had weird pain and sensations beyond just the vestibule, but my doctors assured me this was nerve wind-up that would get better if the source (the vestibulitis) was fixed. In retrospect, I think it's the opposite-- my nervous system was already wound up (or centrally sensitized), so doing something big like surgery just absolutely destroyed it. I now have horrible pelvic pain and numbness that goes into my buttocks too. Sitting is very painful, and now even lying down in certain positions is too. Sex is out of the question. I have developed fibromyalgia too. I somehow finished grad school and have just started a job full time but I don't know if I'll last, unless the distraction somehow helps my pain. My life is really ruined. I don't even want to live it anymore.

Please try everything before surgery... also consider seeing a pain doctor BEFORE surgery-- they will tell you the real scoop on what surgery can do to people with chronic pain. They can suggest medicines/treatments that maybe your gynecologist is unaware of.

I understand I'm probably the worst case scenario. I'm not saying surgery is for no one. But if you have doubts, if you have a sensitive system, if there are things you haven't tried... put it off. Things can get a whole hell of a lot worse.

Greeneyes, the first thing I thought when reading your post was that it could be a muscle problem. Maybe continuing dilators longer, and adding PT, would help? Though you say the pain is the worst at 6 o'clock, if it's there all around, then maybe it's not solely a scar tissue issue. Of course, I know muscle pain is the go to answer docs often give when there's pain post-vestibulectomy, but maybe it is a factor here.

Ms. Cindy I'm so glad the PRNA is working for you.. didn't mean to imply everyone is doing as badly as me!

I think you're right I should see a PN specialist. Just since it will involve travel and lots of money, I thought maybe I should try the steroid med for autoimmune disease route first.

Also, sorry everyone for coming on here sort of infrequently and posting very long, desperate updates.

Hi everyone. Here's my update: I've found a pain doctor to work with and he's started me on lyrica. He agrees with my surgeon's idea that I have central sensitization going on. technically i even meet the criteria for fibromyalgia now. anyway, he thinks that when this process is happening, big interventions like surgery or nerve blocks just upset the nervous system more and make it worse. So he just wants to have me try more meds. I'm not really satisfied with that so I'm also going to TRY to be diligent about exercising, and I'm going to try acupuncture too.

The other thing is that the blood work I got following my abnormal brain MRI shows that I have some markers of possible autoimmune disease, though I don't have any of the big ones so it would just be some "unspecified" one. So after lyrica I'm supposed to try a steroid just to see if it helps-- if it doesn't that would rule out autoimmune disease, and the weird blood results would just be another annoying abnormality that means nothing.

I'm really getting worse and worse, with the pelvic pain and overall body pain, though the pelvic pain is my primary concern. I'm trying to sit as little as possible, not only because it hurts but also because I've read on the pudendal neuralgia sites that sitting is bad in the long term. Though the pain doc is sort of dismissive of pn, and my surgeon decided i don't have it, I no longer fully trust the docs. I do want to find out if i have it, but I don't think I should be getting nerve blocks as a diagnostic. I would like to get an MRI to diagnosis it, but i would need a referral to the doc who does the mri in New York, and my neurologist wouldn't write it. I doubt the pain guy will either... maybe the rheumatologist because she is compassionate? I don't know. I'm sort of lost right now. So much pain and so hopeless. I'm so desperate I even got excited about an article my brother sent me about use of ECT for people with depression and chronic pain.

Amidst all this, I still managed to have sex last weekend (with the help of alcohol). The pain wasn't horrible at the time, but the after effects were. I feel really dumb for doing it. I hope i didn't cause a permanent set back.

Why the f*** is there no discussion pre-surgery of surgery aggravating or causing pudendal neuralgia and or central sensitization? No warning that people whose systems are very sensitive will react badly to surgery? My pain doc told me it's so sad because people like me (and it sounds like you guys too) don't get to him--who could have warned them not to aggravate the system with surgery-- until after the fact.

I'm crossing my fingers that one of us, someday not too far away, will come on here with news of great progress.

Thanks, Holly. the next MRI is not for another week.

So even though your doc/PT thinks its a central issue for you too, you are still treating it with PT? Or is the PT for other reasons?

Cindy, thanks for the advice and the pt list. Good luck with your block! You are a brave woman. And it's great to hear you had some reduction in pain. I'm sorry if you've already said this, but how exactly was your pudendal neuralgia diagnosed? By touch, or by nerve block, or just by describing symptoms?

I'm very confused because now my gynecologist/surgeon says I don't have pudendal neuralgia. He believes my issue is more centralized, since various nerves all over the place are sending pain signals. He may be completely right (more on that in next paragraph) but I'm still afraid I do have p.n. and need to do something about it.

I got results from my brain mri and it was abnormal. I have to get another mri and a spinal tap because I may have some sort of autoimmune disease or other problem. Not MS though. Or it could be nothing, the neurologist said. And in that case, I'm off to the pain doc to really treat this central sensitization thing. I've already added cymbalta to what I'm taking. It's making me really loopy, like drunk feeling. It's hard to get my work done.

God I wish doctors understood how to treat this stuff better! For all our sakes.

Thanks so much for your reply, Ms. Cindy. I'm going to look into the thing you mention and also look back at your posts. You have had a hell of a time, I know, and I hope that your treatment continues on a good path.

About the fingers/toes: I'm only on gabapentin and a sleep med (trazodone) and some supplements (biotin and iron, because my hair's been falling out), so I don't think it's due to medicine. I just have this horrible feeling doctors will just shrug their shoulders and I'll never know or get a handle on it. Same with the leg/buttock pain. Obviously the pudendal is the worst, though, and has spread. Now it even hurts around my anus (this is so humiliating to say).

I hadn't considered that maybe a better physical therapist could help me, so thanks for that idea. Mine says my muscle tone is good, everything's relaxed, so I'm not sure that physical therapy can help me. Sometimes she does weird things like push her fist against the outer labia (I guess to stretch?) to try to help the nerve but it never does help.

The reason I fear the nerve block is that I went on some pudendal neuralgia forums and some people had complained of it making them worse. Also, my gynecologist, or even the pain clinic the neurologist mentioned if I decide to go there, would do it without any scan, just by poking around for the painful spot.

Do you think I should just go to the pain clinic now, and sort of make them my lead doctor with this? I feel like I'm in no man's land-- my gynecologist is only offering the nerve block, the neurologist is offering some meds but obviously has some ideas about my prognosis that are very very depressing.. I'm nervous about totally giving up on my gynecologist since he did the surgery and may know best some things about my history and recovery. But I also know I need to be my own advocate and seek out the best treatment and get a handle on the pain somehow, to some extent, soon, before it really wrecks my life even more.

lastly, and I pose this to all surgery survivors (and I know it probably seems weird I'm worrying about this since my primary concern is pain): do you have any concerns about the state of your vagina post surgery? Mine is sort of segmented and weird, like there's a big flap/bump at the opening at the bottom. Is this a deal breaker, where a guy would be horrified and squeamish? How do I know how bad it is? It horrifies me, the way it feels and looks, but maybe I am being too self-critical. I've had some sexual contact since surgery (no intercourse) and nothing was said, but that doesn't really reassure me, because I doubt a guy is going to say "OH my god, what's wrong with your vagina?"

Thank you Cindy and all. Sorry I've been MIA. for a while I was trying to avoid here and avoid thinking about an unsuccessful surgery. But I'm past the point of thinking it could be successful.

Sorry it's been awhile everyone. I have some bad news. I've been getting increasingly worse. I think I had a bit of pudendal neuralgia before surgery (undiagnosed) and now it is sooo much worse. I also have nerve pain in my thighs, buttocks, and even fingertips and toes (though those last two don't bother me that much).

I'm so scared. I just saw a neurologist and though she's saying I should get a brain and spine MRI, she thinks they'll come back negative. And so it will be more experimenting with nerve pain meds and/or pudendal nerve block (which I'm scared to try since it makes some people worse). She told me I need to be realistic that I will probably only ever reduce my pain, not get rid of it. I really wish she had bothered to ask about my mental health before being so blunt with me. I feel like I want to die. If anyone can offer any support, I'd really appreciate it.

I'm a fool for doing the surgery.

It's hard for me to advise about dilators because my recovery has been way slower than yours. i didn't start dilators until 10 weeks, and I'm now past the four month post-surgery point. I'm on number four of five dilators but it still hurts. I bought them from my doctor-- they were glass and expensive but insurance covered half the price. I would assume that once you get to the biggest one and it doesn't hurt then you could stop. However if you weren't having sex I wonder if things could tighten back up. I don't know, I would talk to your doctor. I'm amazed that you are using dilators when your stitches are still in; that would have hurt me a lot.
I know it's hard, but be patient and try to be thankful for where you're at.

Honeyblue, I have blue cross and they covered about 55% of the $8,500 fee. Sorry yours is being so stingy. Let me know if you want more info from me (I think we had the same doctor, same location, etc.).

Here's an update on my progress post-surgery:

I am now a few days away from the 5 week mark. I still have pain (though I think it is more often muscle pain than wound pain) and some bouts of intense itching (that I believe is part of the healing, since it feels different than the itching I had pre-surgery). It is now much easier for me to move around and walk places. I ice at least once a day still, because it relieves pain so well and I think that's probably a good thing to interrupt the cycle of pain.

There have been days where I feel I've done a bad job in my recovery-- I've gone back to school and sometimes I have walked faster than I should when with friends. I stress about that sometimes. I'm not really sure if what causes bad scarring is the movements you do in the first six weeks or the lack of dialator therapy afterward.

I got the biopsy report on the vestibular tissue that was removed during the surgery. It confirmed that I had the nerve proliferation problem and the mast cell problem. I developed VVS after a yeast infection and then a bacterial infection and then a doctor repeatedly prescribing me anti-bacterials (mainly metronidazole) without testing if the infection was even still there. So for me, a response to these medications led to nerve proliferation.

This gives me a bit more confidence that I made the right decision to have the surgery. I know there are other treatments for nerve issues but I tried them and they didn't work. Sidenote: sadly I am back on gabapentin because my outer thighs got numb and painful sometime after the surgery (a nerve problem). I am so hoping that this will resolve quickly. But I want to say for anyone considering surgery, don't be afraid of this happening, it is really rare--my doctor hasn't had any other patient develop this--and might not even be caused by the surgery. Apparently my body just jumps on any chance to develop a problem! excuse my self-pitying...

I do have a question about the muscle pain: does it make sense that I'm having that if at my pre-surgery exams my doctors said I only had a little muscle tenseness (ie, you wouldn't really say I had pelvic floor dysfunction)? I've had the pain before and after the surgery--though it has moved to a different area. Could the surgery have caused a new type of muscle pain that (hopefully) may resolve once the wound is totally healed? Or could it be nerve and not muscle pain? Does nerve pain only affect the surface of the vulva?

Lisa (everyone really) you are so brave. Three surgeries is a lot. I am optimistic that you are on the path to recovery now.

oh one last thing: my outer labia are still a little swollen and a little red on the outside. I hope this doesn't mean something bad. It seems like other peoples' swelling was gone after a week or two.

Agnes, is the neuralgia you have in the vestibule or elsewhere?

Ms. Cindy, it sounds like you are making the right decision. I hope the procedure isn't too difficult and that it helps your pain.

Anna, thanks for your advice. That does help. And I'm hoping that as time goes on my body will figure out a more natural stride. I mean it's already changed-- first week I had to crouch a little as I walked to avoid pain, and now I can stand up straight.

This is such a slow process, and I'm alone most of the time now, so it's tough. It's hard to stay strong, but I guess that's what we've got to do. I hope your recovery continues on a good path. And best wishes to all you other surgery survivors out there too!

Hi everyone, I have an update (and a question).

I had the vestibulectomy 2 weeks ago. Recovery is tougher than I thought but a lot better now than the first week. At this point the incision doesn't hurt that much (except for when I move my bowels), but I still have a lot of general soreness. I still have dark bruises and swelling on the labia majora. But I am feeling more optimistic than I did a week ago.

My only complication has been that probably due to my positioning in surgery I have developed numbness, itching, tingling, and sometimes pain in the outer part of my right thigh. It apparently happens when the nerve that goes to the outside of your thigh gets compressed by a groin ligament. This has been a real nuisance, especially since it's going to take a while to go away, but I just try to remind myself that if the surgery works, even partially, it'll be worth a few months of numb/itchy thigh.

For those of you who have been through recovery: how did you manage to shuffle for the full 6 weeks? I'm finding it really hard because keeping my legs so close together means I move sooo slowly, and it's frustrating and makes me self-conscious. How much of a shuffle should it be-- like a very elderly person with a walker? Or a little larger stride than that? I feel stupid asking this but I don't want to pop stitches and I want to be able to walk places.

Sorry, Amy, it wasn't clear to me that you were giving your recommendation on who should get surgery based on the patients you have seen; it seemed like you were giving the general guidelines on who should get it. And I haven't heard of any surgeon who only recommends it for or only gets good results for those with primary vestibulitis.

Thanks everyone for sharing your surgery experiences! I have decided to go ahead with surgery after getting a second opinion; just not sure with who yet.

Amy, I think you have misinformation about proper candidates for surgery. Surgery is not reserved only for people with primary vestibulitis. I got vestibulitis after an infection (previously had no pain/itching) and I am still a candidate. Also, you can have other symptoms as long as you truly have vestibulitis. The vestibulitis can lead to various problems because it upsets the whole area--this does not mean the surgery is not for you. Would you refuse to remove a louse from your head because your whole head itched, not just the spot where the louse was? (excuse my much-exaggerated analogy)

I'm not a doctor though, obviously-- just repeating what I have recently been told.

Agnes, I hope your recovery continues to go well. At what point were you able to sit? Did you need to use a doughnut?

Amy,

I tried PT for six months. I did biofeedback (and was able to get my muscle tenseness into the normal range), myofascial release massage, trigger point injections, and various daily exercises to get my hips even (one was slightly higher than the other and they thought this might be contributing to my pain.) I felt no improvement in my vestibulitis from all of this. Would you still say that I should have given it 9 months, or is no improvement after six months an indication that it's not working?

Frankly I am afraid to go for another lengthy PT trial, because my condition is only worsening. Even in the past few months it has worsened significantly. I'm afraid if I put off surgery longer, and other things don't work, then I'll be such a hopeless case that surgery can't help me and possibly nothing else can either.

thanks for your thoughts.

Sara

I don't think I would be jumping into the surgery. I have tried just about everything over the past 5 years, including physical therapy, which I did not get any relief from.

My vestibule does show visible redness and sometimes tearing, so I don't think my problem's origin is neurological. I am going to have a second opinion from Dr. Goldstein next week though, so we'll see what he says.

It's hard to know what to do when you have both the classic vestibulitis and other vulvar pain/itching as well. I wish there was more research on what is effective in this case.

Ozagnes, best of luck to you, too!

Hi everyone. Thank you so much for sharing your stories.

I am most likely going to have a vestibulectomy next month.

My vulvar vestibulitis began 5 years ago. For a few years my symptoms were just pain in the vestibule on touch, and random itching/rawness in other areas of my vulva. But over the years it has gotten worse, and now I have pain with sitting, wearing pants, and sometimes for no reason at all. I also have this intermittent deeper pain--it's hard to describe where it is. Sort of feels as though my actual pubic bones are aching. It's really distressing, because it not only hurts badly but also makes me worry that I'll have the surgery but this symptom won't go away. From what I'm reading though it seems possible that that is muscular pain that could dissipate once the problem area of the vestibule is removed. Has anyone else had this deeper pain? Is there anyone reading who has had the surgery and found that it helped symptoms beyond just the vestibular pain?