Vulval Pain

[Yellow12]

Hi, I want to share my experience with this, I hope it helps. It is going to be a bit long, sorry about that.

In March 2011, the month I got married, I remember getting a bit sore down below, it felt like the onset of thrush. During the following months the burning sensation kept coming and going, each time it came was worse than the time before. The pain spread, to my bladder (I felt the need to pee constantly), my urethra, my reproductive organs (felt like a constant period ache) and then my legs. I also had this awful burning sensation when I pee'd. It was horrific. I had many trips to the dr and was prescribed allsorts of drugs, gabapentin amongst others and nothing helped and the side effects were not pleasant. I was referred to the vulval pain clinic in August and in typical NHS style I had to wait 3 months for the appointment. This was not an option for me, I was very depressed, I was not coping well with this pain at all, it was all too much. We decided to pay for a private consultation and went to the JR in Oxford. The appointment was disappointing, she went through all my notes and basically said that I was doing everything right and to carry on doing what I was doing. I had no history of pain like this, no infections, no medical condition that could explain it. At the end of the appointment she handed me a business card and said 'give this chiropractor a call, some people find it helps'. I was devastated. I left a very tearful message on this chiropractor's voicemail, I had absolutely no idea how this could possibly help me and was very sceptical. The chiro called me back before I had even got on the A34. We had a long chat on the phone, she made no promises, she said she does get 'referrals' from the JR, some women she can cure, some she can help and some, sadly she cannot. I explained my situation, she said she often finds that women with this problem have experienced a trauma to the lower spine, is this something I can relate to? I could not think of anything, then my husband recalled that I had fallen down the stairs about a month before we got married. We were getting ready to go out, I was walking down the stairs, I had tights on and slipped, my legs came out from under me and I landed full on my tailbone. Jesus it hurt at the time but I didn't think anything of it, I spent 24 hours in bed, hobbled around for a week or so and carried on.

So, I made an appointment to see this chiropractor, I was relieved that I may have finally found a diagnosis of sorts and a possible cure, finally I felt a bit more hopeful.

The outcome of the initial consultation was that when I fell I had badly twisted my pelvis, this had a knock-on effect to my lower spine and my pubic bone. In our tailbone area are millions of nerve endings that travel to our vulval area, bladder and reproductive organs, I had badly twisted mine and this was putting pressure on the nerves and causing the pain. The rotation in my pelvis had caused my spine to compensate and bend at the bottom, this was causing the pain down my legs. I also had a bad neck that was causing my headaches and sickness (this I had put down to stress).

So she did what she did, she uses the McTimmoney method so thankfully no bone crunching. As soon as we left I knew instantly that I was heading in the right direction with her, it was like a weight had been lifted. That period ache went straight away, the rest of the pain unfortunately got worse in the early weeks and months. But after a while I started to have less pain, then days that were pain free and that is when things really started to turn around for me. She was adamant that if you can have one pain free day you can have another and another and so on. After about 2/3 months I stopped the drugs, I don't think they were doing anything anyway. Very gradually things started to turn around for me, my sex life returned (not quite the same as it was before but just happy to be doing it again tbh), then I got pregnant and had a natural birth in November 2013 with minimum pain relief. I am still seeing this chiropractor every 6 to 8 weeks mostly for maintenance and on going problems with my neck. I experienced some vulval pain in the last couple of weeks for the first time in I don't know how long, I don't think I will ever be free but it no longer feels like a curse.

If anyone wants to talk or ask questions please do. I am not sure if I can help but I do understand and I will try.

[Hidden]

Hello Yellow

I'm so pleased for you and your family and to hear a positive outcome.

I wish you many pain free days. Encouraging to hear your story. Thank you.

Best wishes

Rachel

[Hidden]

yes, this sounds like coccydynia what you had...and maybe some injury to the pudendal nerve which of course results in vulval pain ....

try and get a pain consultant in the future when the chiro won't be enough.

I'm going to write on this forum again the pain medication WORKS, but it takes months to see results so don't give them up too fast

[Hidden]

oh,I see now you did go to pain consultants...my bad

Dr Baranowski at UCL London is the one to see for this issue.

on a side note, I simply just don't understand how amitriptyline just doesn't work for so many for nerve pain, it's a very strong medication....and the LYRICA, my god, that stuff is so powerful it makes the skin on my abdomen NUMB....it puts the nerves into sleep mode

[Edenborough in reply to Hidden]

Hi, sadly we all react differently to drugs, my sister cannot take an asprin because of the effect it has on her. I have been on amitriptyline and lyrica for 2 years now and some days it does not help my pain that much, although the amitriptyline still sends me to sleep so that helps.

The post from yellow12 above has given me new hope, thank goodness for this forum it sometimes seems to be the only help we get.

[Yellow12 in reply to Hidden]

Hi Mary Jane, I was on amitriptyline, it made me sleep way too much. I got the impression from my dr's that they had absolutely no idea what to do with me, especially when the specialist hands me a business card at the end of the appointment in a very 'under the table' sort of way. No explanation, just try this. It made me doubt everything they were saying and I hated the drugs, I came off the gabapentin because I wanted to truly see what effect the chiro was having and I felt she was helping me more, I also felt she understood the problem better than they did, she was certainly able to give me more answers.

Thank you for the info re the chap in London, I wish I had found this forum when I looked 3 years ago, anything I googled I just found too depressing, I could never look for long.

[Edenborough]

Hi, I found your story so interesting. I was diagnosed with pudendal problems and was operated on by Proff. Robert in France in August 2012. My problems were more complicated in that walking also made my pains worse. The op was partly successful but then in September 2013 I suddenly started with bad vulval pains which have never gone away. I contacted a Dr Ruth Jones in Southampton who seems to be a bit of a guru on pudendal problems and she told me to find a physiotherapist who is a member of MACP. I saw one 2 weeks ago who found that I have a big problem with my right hip as I had been walking badly to protect me from my pains. You have given me hope that when we get that problem sorted it may also help my vulval pains.

I sincerely hope that you can keep pain free and many thanks for sharing your story, you never know who it may help.

Thanks again, Marion

[Yellow12]

Hi Marion, yes my pain also worsened with any physical activity, it was another reason why I was sure the chiro had the answer for me. The only time I felt any relief was when I was lying down, ie not putting pressure on my coccyx.

I find it really sad that some people in the medical profession have such a low opinion of chiropractors. I may as well have told my gp I was practising black Magic when I told her I was seeing a chiro. She said 'as long as they aren't ripping you off', I found that ironic as I had just paid £250 for an appointment with a specialist, who I would have waited months to see on the NHS, for a business card.

For me it was the best thing that could have happened. It all clicked into place.

I hope that someone can relate to my story. I wish you all the best.

Liz

X

[ElseCC]

Thank you for sharing your story; it is good to see people have positive results. I've found the internet to be a mixed blessing; this Forum is a great discovery as I no longer feel I'm on my own with this, but if I read other sites for too long I convince myself I'm going to be dead and buried my Christmas. I guess that's what pain does to us sometimes.

I also see a chiropractor. Unfortunately she can't take my pain away, but she was the first person to question whether it was adhesions, and to subtly shed some doubt on whether more exploratory surgery was the option. I've found her explanation of referred pain really helpful too i.e. you may feel the pain of injury/surgery etc somewhere else in your body. Sadly I tend to pick which medical doctor I tell, as like you I've experienced medical staff who have actually mocked me for seeing a chiropractor/acupuncturist despite the fact I have been seeking medical advice on and off for years and just get 'take the medication and if that doesn't work we'll cut it out'...