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[Treehouse1]

Hi there

Bit of a long one this is I am afraid, but would appreciate advice.

Have suffered from really bad Vulvodynia since 2012.

I couldn’t work anymore and lost my career, my livelihood, my lifestyle , my social life and at several points I seriously thought about taking my life. I even approached Dignitas.

Anyway went to see a pain management person in July 2022. They were very cold and abrupt in their approach, but as they were the only one available, I had no choice.
They offered me a pudendal nerve block which i gladly accepted as the pain was 9/10 day in/ day out.
I finally got the appointment  for the procedure in November 2023.
Sadly I got covid three weeks before which ruled me out.
They said they would get me a new appointment asap.
I got my new appointment in Nov 24. When i rang up however to confirm , the clinic said i was down for an ablation procedure, not a nerve block.
I found this odd and as it was then 2 years since the original consultation I felt abit unsure..
But they told me to come and see the consultant anyway and they would discuss with me.

Now inbetween nov 23 and nov 24 I went to see a ‘hands on physio’ for nearly 8 months who worked on my piriformis which he said may release the pressure on the nerve. And gradually it did. Mynpain went from a 10 to betweena 4-6, and i now sometimes get 10 days a month more or less pain free and am no longer at the end of my rope.

Anyway, i went to see the consultant and they made no attempt to conceal their annoyance when i asked them to confirm which procedure I was having and why. They snapped back ‘well which do you want’, which of course I had no answer for as I am not an expert

I explained that I had beentold to attend the appointment by the clinic to discuss options, and I asked what success rate the nerve block had. I was told frostily ‘sometimes it works , sometimes it doesnt’.
I asked about downsides and they said ‘you might be in more pain than when you started’. When I said that that wasnt great as I had only just got back basic functionality , there was an eye roll followed by it would only be worse temporarily.
I said i would defer the decision until i had considered it further.
The nurse in the reception said ‘oh, theyll be livid now if you didnt do it’ .

Anyway , since the  I have found patient leaflets that are given to patients in other nhs areas.
I think I have gathered that relief is only temporary from the block, that its usually used as a diagnostic, and that you could indeed end up in a worse position.

I wondered if anyone here has any thoughts/advice/experience on this procedure , and how to deal with someone who will be doing a procedure who for some reason seems to dislie me despite best efforts.

Thankyou and sorry this is so long.

[CLKD]

Sadly many medics haven no bedside manner, especially if it's a private clinic so they can see money disappearing when patients won't attend.

Hopefully some1 will be along with advice.  U could put 'pudendal nerve' into the search box, make notes

Do U have to do homework from the physio.?

[VioletAquarius]

Gosh, that is awful how they have treated you. I wouldn't want to go to them for any help.

Acupuncture may help with Vulvodynia. Have you looked into this?

[Minusminnie]

I would advise that you read around this before accepting a nerve block.
I had one done vaginally by a gynaecologist in an nhs pain clinic in 2013. It was unguided and done if I remember rightly at the ischial spine.

You also need to be clear about what they inject I can’t recall & sorry really don’t have time at the moment to find the pain consultants letter. The injection was done by a gynaecologist who was working alongside him.

Have you looked at the HOPE (health organisation for pudendal education )website where there is a forum. It is American but may help your decision. Many recommend a guided injection or at least so in 2013 when I was researching it that may have changed.

I had vulva pain and eventually just thought s**t or bust.

I had after and now have still some muscle tightening & felt that it had only irritated the nerve.

[Treehouse1]

Thankyou for the responses so far.
You have made me feel much better mentally as I thought it was just me
The consultant was more or less sneering at me , and although I continued to be warm and polite, she was dismissive.
Eg. She spoke about pelvic instability at one brief point , isaid ‘i see’, (which i did), she snapped back ‘oh yes, what exactly do you see’, she was a bit like Doc Martin from the show if you have ever seen it!

Anyway, thanks for the ideas, i have tried acupuncture to no avail.
No homewrk from physio ( i had to stop as i could no longer lay on my front as have had to have bone graft in my jaw , due to teeth probs ,but intend going back later when fully healed).

The pudendal procedure was to be guided, and it was a mix of anaesthetic and steroids I finally discovered.
It was goimg in through the buttock
Thankyou Minus Minnie for your thoughts on this. I feel your pain literally and metaphorically.
This is exactly what I was concerned about.
That, and that I have read in a study it can only last a max of a year or so, you can only have it for 2 years, for many it only lasts for two months and for some it makes it worse….none of which was mentioned at the consult now nearly 3 years ago.

[CLKD]

Why do some go into the medical field  .  I've worked with some like her   

Sorry don't know who to suggest 

[Treehouse1]

Thanks. She’s NHS too. Unfortunately the only one in my area.
Its a bad show when you cant ask questions re your own treatment.
Al her people seem wary of her too.

[CLKD]

MayB time to see a dedicated menopause specialist at a Cliniic.  Often those working in pain relief are anaesthetists ......... there's no need 4 a clinician to appear cold!

[bombsh3ll]

I wouldn't feel comfortable having any kind of treatment by someone who has treated you in such a rude, offhand and unprofessional manner.

The aftercare, particularly if you were to have a complication, is likely to be similarly of a poor standard.

If you were still in agony I would suggest trying to go to another health board - I understand this is possible in England - or privately.

However as things sound like they have improved a lot, it may be better sticking with the non invasive treatments you are doing and this doesn't rule out a nerve block in future.

[VioletAquarius]

Hi Treehouse

Have you heard of Kore Therapy?

This is for pain relief, which you could look into to see if it helps with your problem.

[Minusminnie]

You may find a book called Teach us to sit Still by Tim Parks of interest.

Also Eye of a Rook by Josephine Taylor

Health Unlocked website under pelvic pain

[Treehouse1]

Hi there, no not heard of Kore therapy or those books.
Thankyou . I shall investigate.
Xxx

[Wania]

I'm sorry you're going through this, and although I don't have experience with this I wanted to recommend something.

Have you at all heard about dr Sarno? If not, I would recommend book "Mindbody Prescription" and others. Then follow with Nicole Sachs podcast/book exercises.

I am in constant chronic pain for a couple of years now, some days are really a struggle. This doesn't just relate to pain, it is stomach disorders, skin disorders and a big spectrum of other things.

As sceptic as I was I have read the books, now listen to N. Sachs' podcast and carry on with daily exercises. The effect is mindblowing. In her podcast and in Sarno's book they both touch on the subject of procedures working for some and not for others, or giving only temporary relief etc.

Believe me I know how it sounds. But I also know it works. For me it's the stomach symptoms, muscle pain,  stiff and very painful joints, jaw and eczema. And after doing the work the thing that appeared the last is the first that started disappearing (eczema), there are days where I have no pain in my jaw and shoulder, and if it is there I know I have some work to do. IBS is mostly not existent (unless I have a bad day! which brings it nicely to the point of the whole thing).

Sarno has called it TMS (Tension Myositis Syndrome). Just please have a look at it before you let them cut you. And perhaps find a TMS specialist in your area, if you will like the idea!

Best wishes

[MrsMitch]

Hi Treehouse, I'm so sorry to hear how you've been treated. I had similar from my gynae in the end, in as much as she began to get very dismissive of my pain from the vulvadynia she said I had. I had the nerve block and tbh I think it made my pain worse in the end. Great for about 24 hrs then horrendous.  She told me I was imagining it because I'd had a brief period of relief,  I only thought it was worse when it came back. Yeah, right!!
She eventually discharged me saying to go back to my GP because she was annoyed I kept asking her, as her various treatments didn't work, could I possibly be having menopausal issues, instead.  In the end it turned out I have VA but now my GP is concerned I do have vulvadynia too.
Tldr: I wouldn't have another nerve block if it was offered because I honestly don't know if the pain in that area may have been improved more with VA treatment if I hadn't had one. Plus vulvadynia does seem to be almost impossible to treat and easy to make worse.