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Vulvovestibulitis/vulvodynia - anyone with any experience?

(8 Posts)
CircularQuay Mon 22-Aug-11 18:10:54

Just wondering if anyone with this condition has been pregnant and given birth. I'm currently 35 weeks into my first pregnancy, which has been uneventful and I'm on track for a home birth.

I was diagnosed with vulvovestibulitis/vulvodynia (the names are virtually interchangeable) about 15 years ago after suffering primary unexplained dyspareunia. Sex was impossible for me for more than ten years. I then met my husband and with his patience and understanding we have been able to have intercourse. Happily, we had no trouble conceiving.

My vagina has been quite sore throughout the pregnancy. We've tried to have sex a couple of times but it hasn't been possible. Over the past week or so I've been experiencing elevated levels of pain and my vagina is extremely tender. I am starting to worry about the pain of vaginal examinations during labour, as well as how the delivery itself will affect my vaginal tissue.

You may be able to guess from my post that I am a doctor myself, so I am only too aware of the fact that very few health professionals (GPs, midwives, gynaecologists included) have any experience or even awareness of this condition. I know that there is no real treatment. The only things I have found helpful in the past have not been accessed through the NHS.

I have not mentioned my condition to my midwives because I know they, in all likelihood, will not have come across it before, and also because there is actually nothing they can do. The reason I have chosen a homebirth is to hopefully avoid as much intervention as possible. I would ideally like to avoid vaginal examinations altogether, but realise this may not be possible. I'm really hoping hypnobirthing will help me feel in control and deal with the pain.

Sorry, I realise I'm actually not asking much or making much sense - I guess I just want to hear from anyone who's been where I am now.

ghislaine Mon 22-Aug-11 18:58:51

Is it not possible to request an ELCS? I have similar sounding symptoms and have suffered for 14 years with lichen sclerosis. Even before we started ttc I was told by my gynaecologist that I would not be having a vaginal delivery because of the risk of making my condition worse (including increasing my risk of vulval cancer). My private health insurance agreed to cover me for a c-section with no quibbles and I've had no resistance from the NHS either. It would never even enter my mind to try a vaginal delivery. You sound very brave to me.

I'm really surprised to hear that you think the medical profession in the UK has limited or no understanding of vulvodynia. PM me and I will send you the names of at least two very sympathetic gynaecologists who specialise in vulval disease. You might also find these links helpful:

Vulval Pain Society and
British Society for the Study of Vulval Disease
National Vulvodynia Association

Presumably you know about all these already - I found it was a matter of just finding the right person and then a whole network of experts in vulval problems becomes available to you.

CircularQuay Tue 23-Aug-11 13:12:06

Ghislaine thank you so much for posting, and for adding links. I do know the associations you mention, but I must be honest and say that I have basically out my head in the sand regarding my condition for at least the past eight years, if not longer. The process I went through trying to access treatment as a student in my teens and early twenties was demoralising, frustrating, frightening and ultimately useless. Where I ended up finding help was with the use of acupuncture, herbal medicine, homoeopathy and relaxation. Since meeting my DH things have been fine (in that we have been able to have intercourse without me being in too much pain approximately once a month) and it has only been as my due date is approaching that it is something I have started to think about again.

Professionally, I work in a specialty which rarely, if ever, has any connection to genitourinary medicine. I do appreciate (and in fact hope!) that things have moved on since I was first diagnosed, as I was treated appallingly, in ways I would never treat my own patients. One thing I will say is that the experiences I had shaped the way I practise medicine, and I think I am a better physician because of what I've been through.

I can see that an ELCS was the right thing for you. I have treated patients with lichen sclerosis in the past, and it is not something to take lightly. Obviously you have accessed excellent medical care, and I commend you for seeking out the right people. However, I don't feel this is right course of action for me. To begin with, I am not at risk of the same histological changes seen in lichen sclerosis, so there is no physiological benefit to be gained by avoiding a vaginal delivery. Plus, it would be the exact opposite of the low-key, non-interventionist birth I am aiming for, and which I feel would be the best for me emotionally.

Thanks again for your story; it has given me lots to think about.

Littlepic Tue 23-Aug-11 15:11:52

Hi CircularQuay,

This is my first pregnancy so I can't offer much advice but wanted to add my story to your thread.

I have suffered with vaginal pain ever since trying to insert my first tampon. As with many other people with this problem I ignored it (despite my father being a gynaecologist!!!!) for about 10 years and put up with a lot of painful sex. I didn't admit it to anyone until I met my DH. He was fantastic and encouraged me to seek medical help.

Unfortunately my first experience with my GP wasn't fantastic and I left in tears. This promped me to speak to my father finally and despite a rather strange conversation he organised for me to see one of his colleagues privately. He was lovely and diagnosed vaginismus and vulvodynia. Despite my GP being very insensitive he did at least refer me to a sexual therapist after my appointment with the consultant.

I have to admit I was initially reluctant to see the sexual therapist as I thought it would just be a lot of talking. It was however fantastic and very practicle and for the first time in my life after a few sessions I was able to have pain free sex. Six months later I was pregnant and my therapist was delighted for me. He has continued to see me sporadically through my pregnancy and was happy to support me by discussing my condition with my midwife and would have offered me support in seeking an ELCS if I wanted one. I like you however have decided that a natural birth for me would be best as I find a lot of my problems stem from having a very strong pelvic floor and being unable to relax it. I am hopeful that a natural birth will have an effect on this.

In a very long winded way I am suggesting you try to get an appointment to see a sexual therapist (mine always wants me to spread the word!!) as they could support you through the birth and mine will also see me after the birth to check I'm getting back on track.

I wish you the very best of luck with the rest of your pregnancy.

xxx

CircularQuay Tue 23-Aug-11 16:48:10

Thanks so much Littlepic. It's always somehow comforting to hear others' similar experiences, even though I am, of course, sorry that you have been through this.

I'm really glad that you've found a sex therapist helpful. I was referred to one about thirteen years ago who sort of shrugged when I explained my symptoms and said, 'you could always have anal sex'. I was twenty years old! And terrified, humiliated and extremely distressed. Needless to say, I didn't pursue the therapy at the time. Now that things are very, very different for me it may something to look into, but as my baby is due in about a month I imagine it is something for the future.

Like you I am looking forward to seeing the effect that giving birth will have on my vagina. I know what you mean about pelvic floor tension - one of the most helpful things I have found is taking magnesium supplements. Magnesium helps to reduce muscle tension, and about 800mg a day has been tremendously helpful. I have found it more useful than the routinely-prescribed amitriptyline/gabapentin etc. At the moment I am hopeful that the tools I am learning in my hypnobirthing classes will be what see me through a natural labour and delivery.

When are you due? Would be nice to keep each other up to date with how things go smile

Littlepic Tue 23-Aug-11 18:51:43

I am so shocked to hear what your therapist suggested to you. I know if this had happened to me I wouldn't have gone back and this would have put me off sex for a very long time!! I'm so glad things have moved on since then!!

I am currently 22 weeks, so I am some what behind you but would love to keep in touch to hear your experiences.

I also tried amytriptyline but felt totally spaced out so didn't keep taking it. As a neurophysiotherapist I understood neuropathic pain and I think just talking about it, learning positions, relaxation techniques and using oil based lubrication all helped me to move forward. I'm not totally pain free all the time but I am so much better. It's interesting to hear about the magnesium. I think I'll start taking it after the birth, don't want to risk anything new in pregnancy!!
Can I get it over the counter?

I think my Dr is a psychosexual therapist and a GP, he takes a very practical approach and even involved my DH, he taught him a gentle stretching technique and gave him the opportunity to feel included and ask questions. I really hope that you can find someone more professional to help you once your LO is born.

xxx smile

Wingdingdong Tue 23-Aug-11 22:29:28

I also have vulvodynia; like Littlepic, it was apparent when I started having periods and tried to use tampons. I've found most midwives/obs to be pretty understanding and considerate. I'm now on my 5th pregnancy, with three miscarriages and one child, so I've had more than my fair share of internal exams and early transvaginal scans. For me, I know that there is one particularly painful area at the front; if that can be avoided I'm usually ok. I always explain and then ask for a pillow under my hips and direct them to aim for the small of my back, if that makes sense. I've recently found out that I have a tilted/retroverted uterus - apparently the correlation between retroverted uterus and vulvodynia is very high.

I was also prescribed amitriptyline and refused to take it after 2 days - sent me totally loopy and I couldn't drag myself out of bed in the morning. I was sent to see a psychologist too - what a waste of time. He seemed to be obsessed with getting me to confess to some kind of childhood abuse, and took my frustration to be confirmation of this by virtue of denial. In the end I had to discharge myself - I phoned the gynae and explained that since the pain was purely physical, and the therapist was far crazier than I was, I was getting no benefit at all.

FWIW, I found Pre-Seed a really good lubricant (especially when TTC) - comes in very slim applicators which helped. Also, handily, I find the pain lessens around the time of ovulation, probably due to hormones - somebody recommended agnus castus and B-complex vits for this reason and they seemed to help too, though it may be in my mind!

As for the birth - many of the exams were fine, especially when the MWs/docs took their time. I had 4 membrane sweeps - not comfortable but not as painful as I'd expected and the MW knew about vulvodynia. The problem came at the end - due to other issues, I was 17 days overdue, DD was only 2/5 engaged, the amniotic fluid had been entirely reabsorbed and the placenta was degrading. I'd been having contractions for days, been in hospital attached to the monitor for >24hrs and was still <1cm dilated. I then had a doctor who did not listen to me at all, didn't allow me to prop up my hips and was determined to find the cervix (nowhere to be found - too high, too far back...) and yes, I was screaming in pain. Unfortunately she was pretty dismissive of this, didn't seem to understand vulvodynia at all, or even recognise it as a condition. She kept saying that she wanted to rupture the membranes - despite the fact that the scan had shown there was no fluid anyway, so not quite sure how she was expecting to rupture them, with no pressure from inside!

I ended up with an EMCS for fetal distress. Honestly, though, the last 2/3 hours (when this particular doctor came on shift) were the only ones of the whole pregnancy/labour when vulvodynia became an issue, and that was simply because of this individual's attitude.

I have just had my booking appt for the current pregnancy and the MW picked up on vulvodynia instantly and said that if I wasn't being referred to an ob for all the other issues with the last pregnancy, I'd be referred for that alone and would be able to discuss the option of ELCS on that ground. Not sure I'd bother if that was the only reason, I always figured that the pain of labour/delivery was going to be so great anyway I'd barely notice the vulvodynia, but it's good to know that the hospital takes it seriously!

good luck, anyway.

ghislaine Wed 24-Aug-11 09:48:54

I thought when I was writing that if your problems were not related to LS then my comments might not be that relevant! I just hate to see other women suffer for years like I have. I too went through a period of about ten years where I simply put up with it. Before I was diagnosed with LS I would have said I had some sort of vulvovestibulitis of unknown origin and had no idea about the condition of my skin other than the constant fissuring. It took seeing a number of GPs and sexual health specialists before I saw someone who really knew her stuff who spotted all the other anatomical changes that go along with LS. So I guess what I'm saying is please do try again to find someone who might be able to help. There's a list on the BSSVD site of all their members who hold vulval clinics across the country. And I would definitely tell your midwives - I found that even if people doing vaginal examinations don't know what vulvodynia is, once you explain that you need a very gentle touch, they oblige. (Appalled to hear about wingdingdong's experience - that's terrible.)

And can I just add that I'm in awe of everyone who's having a VB. Even if it wasn't going to affect my skin, I would definitely be demanding to be numb from the waist down, given how I feel during sex/scans/smears when my symptoms are not under control!

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