Vestibulectomy

Hi everyone,

When I was initially diagnosed, my gyno told me that the last resort of all treatments was surgery. Well, I'm now at the point where that seems very appealing.

I recently went to see my physio after an approx 7 months absence. She was surprised to see me- she thought the fact I hadn't seen her meant I had been able to overcome Vulvodynia on my own. This shocked me quite a bit- 7 months? Yeah right! My body loves to put me through as much trouble as possible... 7 months seems somewhat incomprehensible.
She did an examination and then went on to biofeedback. Although (after much hard work) she acknowledged I have made some improvement, (I can now 'bulge', have lessened the pain at points 3 and 9 o'clock, and can use two fingers), I haven't made as much progress as what I personally would like.

So I booked myself in to see a specialist my gyno recommended- Dr Lois Eva. She is a gynaecological oncologist, that also specialises in colposcopy vulval disease. She is one smart lady- straight talking, no nonsense, and from what she said it appears like she has conducted a number of studies on trying to find the cause of Vulvodynia, as well as studies regarding the short and long term success rates of patients who undergo vestibulectomies.

Dr Eva was able to tell me some things I hadn't yet learnt about Vulvodynia. The most notable fact being that women who suffer actually have a higher concentration of nerve endings in the affected area, hence why surgery can be a successful method for curing the problem. (This dispelled my main fear that trauma to the area, i.e. surgery, would cause me to 'reoffend' if you will!)
She placed me in a 'secondary' category, meaning that I was able to enjoy sexual intercourse for a period, even if it was brief! Apparently this makes me a good candidate for surgery.
Dr Eva examined me using the colposcopy equipment, and found that I had excess blood vessels in the sore places.
She also looked at a side issue I have been suffering from- stabbing pain in the urethra brought on my rubbing of underwear etc. There was inflammation in the area, but she couldn't determine the cause for this and said she'd like to biopsy the area. However, a biopsy couldn't even be done under local anaesthetic considering the amount of pain she put me through by examining the area. Does anyone else experience something similar? It feels like I have been cut at the tip of my urethra, and it is painful to touch. Rubbing of clothing makes it hard to walk, stand and sit. Passing urine is not an issue.

She has prescibed me a 6 week course of steriod cream, and will not see me again until I have been to see a very expensive psycologist (something I have refused to do up until now). If the steriod creams are ineffective, we will go ahead with the surgery. It sounds pretty horrific and painful... but ultimately very liberating!
I've been a bit of a mess since seeing her, my mind rollercoasters when thinking about it. I would love to hear any input from other sufferers!

Kate

Hi Kate,

Are you on our FB group? (it's private - email sebby if you want an add). There are a couple of ladies on there who have had the surgery. One only about six weeks ago.

I also see Dr Eva. I have generalised unprovoked V so my treatment is a different animal. I'd have to say when my original (halfwit) gyn recommended a sex therapist I could have thumped her. She didn't offer anything else of merit so I found my own specialist (Dr Eva) through my friends GP and the vulval clinic at National Womens. I saw her privately (ouch!) and sent an angry "you have got to be joking" email off to sex therapy NZ (that's Robyn Salisbury who writes the advice column for the Sunday paper). I've been having therapy through STNZ for 12 months now and would have to say it's been REALLY helpful! In fact I would say the most helpful thing. Dealing with this crap takes a bit of work so you need to be mentally strong. It's a struggle! Even is you "only" learn how to relax and quiet the chattering brain it's worth it. Meditation has really worked for me as well and I resisted learning that for a long time.

I would really encourage you to talk to women who have had the surgery. Then find a supportive relationship with a good therapist. It's expensive but I'd forego shoes and anything on my wishlist (hmm food?) to make this go away.

Good luck on your journey. You're in good company and we all have a common goal!
V.

I haven't yet received the bill from Dr Eva... I saw her privately too. How much was it for you (if you don't mind me asking?). Great- I might get in touch with STNZ then. My physio and Dr Eva have both recommended that I see Lena St Martin for therapy, but as far I know that is waaaay outside of my means considering everything else!

Just knowing that you are in the same city and seeing the same specialist gives me a wierd sense of... I don't know what... it's just nice to know!

Hi Kate,

I'm not quite in your neighbourhood but almost!

I saw Dr Eva in August last year (I think), the appointment was $450 because of the colposcopy. Why don't you see her at National Womens? My original appointment was going to be there. I decided to go private when I knew who to see.

My therapist has a number of clients with V which has been really helpful. I've had a crazy 12 months with this shite (I've had it longer it just took me a while to find a specialist) so the therapy has really saved my bacon. I'm sure there have been times when she's cringed when I email. It makes sense to see a sex therapist also!

Message me if you like.
V.

Kate really think long and hard about the surgery, the way I understand it is they take tissue from the bottom part of the vestibule and not up near the urethra area so if that's the same kind of thing, which it's likely to be as several of us have pain there, the surgery isn't going to help that area. In the book "When Sex Hurts" it's touched on that the urethra is the same type of tissue as the vestibule but the actual vagina isn't which is why this affects the urethra so much. If you've still got some progress to be made in physio I'd say keep going with that (different therapist if you don't like the one you see or don't rate her) until you've normalised your PF then look again at how you feel. If you have surgery the follow up is physio anyway so you may as well go all the way with that first. If you do decide to have surgery then good luck.

I used to get urethra burning, not so often any more. It was/is related to IC or (Painful Bladder Syndrome) for me. Many with IC get urethra burning only, and it doesn't hurt me to pee either.

I have a question. If you have both provoked and unprovoked with surgery help the provked pain? Getting rid of one seems better than having both!

Claire

Thanks for that, but unfortunately mine isn't burning- it is this horrible, sharp cutting pain associated with movement or when something comes in to contact with it (pants- including loose cotton underwear.. seams make me shudder... are hell for me now). The pain is confined to the urethra and I struggle to believe that this issue (which has recently become so bad I cannot exercise, and struggle with things like sitting and walking on a daily basis) is related to my vulvodynia- it seems like I am pulling something when I move, or have a lesion that runs up in to me... I don't know.

But my vestibulectomy is in 5 days time, and I may see some improvement. I am having the full vestibulectomy, modified fentons, urethral biopsy (lets hope they find something), and a cystoscopy to check for IC.
I REALLY hope I don't have IC. If this urethral problem is a result of that, I'll be devasted. It has inhibited me from doing what I love and my quality of life has lessened dramatically. When I think of IC as a possibly I get very scared and despair over what my life will be like from here on in.
My surgeon prescribed me 1800mg of gabapentin when the urethral problem became bad, in the hope that it would stop the pain (even though I'd tried amitrip and we knew the pills didn't work for me). It hasn't stopped the pain. I have been taking it for 2 months and I am only getting worse. I can't even have to sex to see if the gabapentin is having an effect on my vulvodynia, because the pain in my urethra is so chronic.

Wish me luck ladies

P.S. In response to the comment that suggested seeing a therapist, I saw a local CBT and she was very happy with my current state of mind and gave me the go-ahead for the vestibulectomy. If she had any doubts, she would have said no... it was very reassuring that she thought I was fine. Have been seeing the physio also, who agrees with the decision

The Cysto/Hydro is likely to flare you because they have to cath you and that will irritate the ureathra. Hopefully you will get over it quickly just wanted to prepare you. Have you checked the IC Network? Lots of us have IC just in the ureathra. I get the 'lesion that runs up in to me..." feeling often, especially after I go to the toilet. Keep a voiding diary too.

Please try the IC diet if you have not already. This helped immensely with my ureathra and clitoral discomfort. Please also remember IC isn't the life sentence you initially think. I thought that way and now I hardly have symptoms at all. Stick to the diet for a good 6 months. Many of us find a treatment that works for IC. I would rather have IC than V (actually I would rather not have both but hey, can't help that!!!) because there are more treatment options and Docs know and validate it as a real condition.

You will find the diet list on the IC network website.

Best of luck,
Claire

Good luck with your surgery Kate and keep us updated. xx

Hi Kate and Mouse, im Fed Up (pun intended...!) - I have just registered with this site, and your conversation caught my eye.. I have just booked in for surgery with Dr Eva, having suffered from The Evil V for 9 looooong years - Kate im very interested to know how you got on? Do hope you are okay x

Hi everyone,

Unfortunately for me the vestibulectomy was unsuccessful. My recovery was agonisingly slow and I encountered many problems along the way (like a ripped stitch and a horribly itchy dermatitis on the wound!). Dr Eva did not want to know about the fact that I still had a lot of pain after 6 weeks. She told me I was fully healed, and that I just needed to get my muscles under control. I hate to think about what her 'success rate' is formulated on. It took me 6 months to have sex again, and, between the operation (November '11) and today, I can count the occasions we have been able to have intercourse on my hand. I have had to undergo weekly treatments from a specialist physio, acupuncturist, art therapist and cognitive behavioural therapist.
The scar tissue has caused further problems, including a generalised raw and itchy pain that I have 24/7 over the perineal area. The urethral pain is still very present... I have not worn pants or exercised in over a year.

So that's me Luckily all the therapy has me in a healthy state of mind to deal with whatever the vulvodynia throws at me next. I don't regret my choice to have the operation, but I might have done more research on surgeons first. I have made such progress since the trauma of the operation and I can credit that to the holistic approach I have taken to my healthcare. I don't know where I'd be if I hadn't met the specialists listed above. They have changed my life. I know this is going to be a long road, but I am confident that I will be supported and listened to- something that Dr Eva could not offer me. The Auckland DHB has been a life-saver in this regard- I know now to stay away from gynos and surgeons.

Fed-Up... Let me know how you got on. I really hope you were one of the lucky ones. I am going to organise a support group in Auckland through my CBT. If you're interested, email me at k8.hodgson@gmail.com. I have a support group in Hamilton and I am so thankful to have met them. It's about time we got one up here!

Kate x

Kate, you and I seem to have similar stories. I have secondary vestibulodynia, having had a few months of pain-free intercourse before things started going down hill. Now, 6 years later, I am currently recovering from a vestibulectomy in June.

In addition my vestibule pain at 6-8 o'clock and 3 o'clock, I got a fissure (a cut) near my urethra at 11 o'clock. The specialists I finally saw about it say that fissures are common in VV patients. For reasons unknown, many women develop these tiny tears in the tissue down there. Mine was definitely the burning, stinging feeling upon touch, and it was slightly different than my other vestibular pain. I wonder if this is what you have, but maybe right at 12 o'clock on your female clock :-).

In my case, I went through all of the neuro meds with no help, including Gabapentin. They sometimes suppressed unprovoked twinges of pain, but never helped enough. Plus, I was told that the only real cure for me with the addition of the fissure was surgery. So, after battling for 5 1/2 years with it, and exhausting all other options (find my other posts for the list), I did elect to have surgery.

3 months later, I am still unable to engage in any sexual activity. I still have pain between 10 and 2 o'clock when touched. My doc said I may just need a few more weeks/months to heal, but there is a possibility that it did not work all the way. I guess I'l just wait and see.

For me, surgery was the only other option, so after MUCH debate, I went for it. The worse thing that could happen is that I stayed the same (which would be devastating, but still.) But there is a lot to gain if it does work! So I can't tell you what to do for you, but I hope my story helps a little.