Just me, asking for some advice please!

[PainNoGain]

Hello fellow FWR’s

I’ve NC but if needs I’m sure @MNHQ will confirm I’m a long term poster. I feel a bit ridiculous even posting this but I’m desperate for some advice and as I’m constantly blown away by the clarity, expertise and just general amazing ness of the woman here I thought I’d take a chance and post, even though strictly speaking it should probably be somewhere else. Warning - likely to be long, dull and medical so if that’s not for you please feel free to look elsewhere.

I have chronic pelvic nerve pain which (as far as I can make out) has resulted from a combination of a big, back to back baby, a terrible labour and subsequent EMCS, hypermobility, weak core, probably other things. I’m now, after 2 years, being offered neuromodulation but nobody seems to be able to give me any concrete information on where it will sit, what exactly happens and whether or not it will work. I’ve asked for success rates, I’ve asked how it works, I’ve asked all sorts and complained and just got to my wits end but I still don’t feel confident that this is a decision I want to make.

I’ve had 4 guided CT steroid injections which just exacerbated my pain. I can’t sit, walk or stand without pain. I am never without pain. I need to know if this neuromodulator is more likely to increase or decrease my pain because I’m very frightened that if I was forced to endure any more pain I’m not sure I could cope. It sounds dramatic but I feel like it has cost me my life.

I have lost my job, I can’t sit down, I can’t drive, I struggle to do anything much. Pain clinic tells me my brain is just locked into processing pain signals the wrong way and I need to do mindfulness and meditation to make it better but no clues how to make the best of that. youtube videos? I don’t know.

Anyway. Thank you if you have got this far. Does anyone know of any proper studies to support pain management with mindfulness? And how that might actually work in real life?

Also, any studies on the effectiveness of neuromodulation and whether or
Not it helps pelvic pain

I’m sorry to ask here. I just feel desperate. I’ve lost my whole life to this pain. I just would be so grateful for any help or advice. I just posted here because I think you’re all brilliant.

Sounds awful.

Mindfulness is good generally and you can start with very short meditations and build up. There is a really good website that I've used in the past but can't think of the name of it.

We've just started open water swimming supposed to be very good for mind and body incl pain.

Headspace.com

No advice right now, as I desperately need to sleep before work, but I didn't want to read and not acknowledge you . Will be back if I can tomorrow xx

Thank you. I’ve done the Headspace pain management pack and have been doing daily meditations for over a year.

Open water swimming sounds great! Where do you do that?

Thank you Floral

It sounds terrible. A few thoughts;

Try Carol Godridge’s CDs, she does a great meditation one you can buy online, just google her.

Meditation Oasis is also a good website with easy guided meditations .

Try a one to one teacher for meditation . Ask local yoga teachers, try to find someone you trust and like. It can be hard to get into meditation. I found learning to breathe well was a start. Relaxing is remarkably difficult. Having a teacher to guide and support is invaluable initially.

Also:-

Have you tried massage?

I found losing a little weight helped with nerve pain. I don’t know if that is relevant to you.

Time helped. Took years for my pain to subside after DC1. Do not lose hope.

Research if quinine could help you.

I sincerely hope you get some relief with this.

I think one of my frustrations is that not many people seem to work with pelvic pain. It’s like a taboo subject with all of the 14 doctors I have seen so far. None of them are pelvic pain specialists, bar one. I saw him, and he actually said in his letter “our best story...” and went on to detail his best guess as to what was wrong with me. I feel like I’m fighting to find someone who understands pelvic pain issues, possibly a pudendal nerve issue but that’s my own research and not any doctors. I feel like I’m trying to diagnose and treat myself. I’m on medication that I researched and asked my GP for. I do meditation, yoga and swimming, all from my research. I’m lost though with this neuromodulation stuff. I just want someone else to say, look these are the facts - x success and y failure. I also don’t want to be told to “think better” just because that’s what’s currently in vogue.

If this forum has taught me anything it’s to question everything and in my current horrible situation I just want to make sure I’m doing the right thing for me. I’ve got a beautiful 2yo DS and I would love to have another but not currently possible with my pain and the amount of medication I’m on

Hi Op

I have a spinal cord stimulator. My battery pack is in my buttock and my leads run up to T9 T10. I've got excellent pain relief for mine, but not everyone does. Have you seen a consultant who implants these? I think that's your best bet to get information specific to you. Most people have a trial implant before the permanent to see how well it will work for you. I didn't have this but went straight to permanent.

As for pain management and mindfulness - I have not had good results with it but then I was already doing most of what they tell.you anyway - working, exercising, yoga etc and they had no idea about hypermobility either. They had me doing things that I've been told not to do by the hypermobility specialists that I see, but again some people on the course found it helpful.

If I were you I would go for the neuromodulation - like you I'd had many injections and epidurals and resisted having the SCS because the idea of it scared me but now that it's done and I have nearly 100% pain relief I am so pleased that I did it.

Have you tried TENS? I have a neurological disorder which causes back spasms and muscle pain, eventually I will need DBS for the spasms. atm I manage using Botox, TENS, heat and painkillers.

Apparently it can be helpful for pelvic pain, you might need to experiment with where to place the electrodes;
www.ncbi.nlm.nih.gov/pubmed/28458478

Very happy to answer any questions about neuromodulation, either here or via PM.

I live in NE Scotland so go in the sea. If you search open water swimming groups there are a few websites with lists of different clubs and hopefully there will be one not too far from you.

Thank you fascinated yes I have regular massages and I have just started hypnotherapy (3sessions in). I do yoga relaxation with loads of focus on breath, and I also do at least a 49 min meditation/hypnosis/relaxation every night. I probably sound like I’m flitting about with all sorts but I’vr genuinely committed to a lot of life changes with no change in pain. This is why I’m so wary of any further medical interventions

Good luck.

PainNoGain so sorry to hear about your problems. So sorry I cannot help. Just wanted to say that I understand your distress and your despair and your wariness and your overwhelming need to get rid of the pain .

I was in a lot of pain for the last four months of my pregnancy due to blocked kidneys and then I had a back to back labour leading to chronic, unbearable headaches for many months after a badly done epidural. I was in a terrible state and can barely remember the first few months of my DC's life. Only found out much later that this is a known side effect of epidurals and very recently learned that it is entirely treatable! My doctors just ignored me which made me feel even worse.

I really hope you get the help you need. And soon.

So sorry for your awful suffering.

Chiropractor and acupuncture, building muscle always supports frame better and helps with pain whilst things heal/settle down.

My long term pelvic pain (3 years, multiple treatments, no success) was finally treated with intensive physiotherapy.

No idea if that is useful to you, but I remember just how terrible it was having this daily, unresponsive pain. Hope you find a solution.

PainNoGain I am so sorry to hear about your situation. I have dealt with another form of chronic pain in the past (vulvodynia) and it is such a lonely experience. I'm afraid I don't know anything about neuromodulation. I'm wondering if you have seen a physiotherapist or chiropractor who specialises in pelvic pain? Have you had any kind of intensive manual therapy?

OP you might find Dr Norman Doidge's book The Brain's Way of Healing interesting, particularly the chapter with Michael Moscovitz, there's a review here in The Lancet www.thelancet.com/journals/laneur/article/PIIS1474-4422(16)30089-8/fulltext

It goes through in detail the theory of how we get stuck with chronic pain and has some case studies, which may not be about your specific problem but may have things that are useful to you.

There seem to be some pelvic floor specialists. I listened to this podcast some time ago, and the speaker offered to put people in contact with specialists if they couldn’t find one. She is American, but seems to know her stuff.

fitnessandfishnets.libsyn.com/dr-tamra-wroblesky-pelvic-floor-health-for-strength-and-conditioning

I do hope you can get the help you need.

Just to confirm you are right in thinking there is little expertise out there. Sorry not to be more help. www.cochrane.org/CD008797/MENSTR_non-surgical-interventions-for-the-management-of-chronic-pelvic-pain

Sorry to hear of your struggles.
I see you’re having hypnotherapy. I had CBT & hypnotherapy, Health related and anxiety issues, it was amazing for me. I’m sure it all depends on who you see, but keep it up because it seriously helped me a lot!

I wasn't in quite as much precise pain as you describe but the rest is similar and I had a lot of pain due to hypermobilty.

Re open water swimming; there's research on this and it's as much to do with the cold water so you can start today to build up to cold showers.

Basically what ever you can handle daily with the aim to slowly increase the coldness and time over time. The body adjusts and you are slowly able to deal with more.

Good to start now so you can take it into winter.

Definitely work on core.

I have to say I have been very impressed with the mutu system exercises which are for postnatal recovery. She's actually got a 48% off today as it's her birthday. She's a physio therapist and postnatal specialist. I've noticed a big reduction in pain when I do the exercises though I'm only a few weeks in after a whole year of having it! I think access to it lasts two years.

Re pain management I was pointed towards the pain toolkit online, a way of looking at pain as a whole, pacing etc. Do use painkillers esp to help sleep. Do pace and learn what pacing is. Do do physio as much as possible and get your core sorted; basic Pilates is your friend.

www.paintoolkit.org/resources/for-patients

Promo only on today as it's her birthday.

mutusystem.com/program

One cold water therapy link, there are others

www.bmj.com/company/newsroom/cold-open-water-plunge-provides-instant-pain-relief/