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.

As a physician (pediatrician, but I am constantly talking to mothers) and mom of three, I can attest to the damage pregnancy and birth does to our pelvis. It sounds as though you've had an especially rough time, and I'm so sorry you're going through this.

If you haven't already, I would push regular pelvic floor therapy and see where that leads you. I don't know what options you have in the UK, (I'm in the US), but if you can find a good pelvic therapist, it can be life changing. If that's not an option, there are home devices to strengthen your pelvic diaphragm. I ordered the Yarlap after my third baby based on rave reviews. I haven't started it yet, but I need to! (All the therapy work I did after baby #2 got shot with my youngest. I can't laugh or sneeze without peeing, and I have constant pubic symphysis pain.). I'll let you know if it works!

Also, second acupuncture and chiropractic treatments, in addition to everything else, (exercise, meditation, etc.). Consider a low-inflammatory diet as well, very promising for chronic pain conditions.

As to the use of an implantable sacral nerve stimulator, well, that's not something with which I have too much experience. I think your fear of exacerbating the pain is quite valid and I'd pursue that a bit more until your questions are answered and you feel comfortable.

(I wish you could come to the US for evaluation. We do have some really wonderful clinics in this field!)

PS. I'm assuming your docs have done some thorough imaging, such as an MRI, to look for an anatomic cause. You did have surgery!!!

Honestly OP, investigate neuromodulation some more.

Ask to be referred and then discuss it with the team that will implant it. It's a long process and you are evaluated in depth before they decide that you are eligible for it so you will have lots of time to ask questions, really think about it and maybe investigate some other options before you commit.

I had tried everything - mindfulness, tens, accupuncture, medication, physio - I had a nerve root injury and nothing worked to decrease the pain.

I was so against having the stimulator for a long time for the reasons that you are but I was convinced by the drs to try it - best thing that I have ever done. Occasionally I have to turn it off if I'm having a procedure done and I realise just how bad the pain is. When it's on my pain is between 0 and 2. Turned off my pain is 7 or 8. It has changed my life.

So few people know about it, including most drs. I constantly have to explain it to HCPs, most of whom haven't heard about it, let alone understand it.

From my view you have nothing to lose by starting the process - you don't have to have it done if you don't think it will help but I would urge you to speak to the team that really know about it. They will be able to give you an idea of how well it will work for you.

Most people have a trial but my consultant didn't want me to have one but he was certain that it was going to help my pain. The recovery is quite long and you can't bend, twist or lift your arms up for about 6 weeks but as soon as those restrictions were lifted I was encouraged to start exercising, get back to work, do yoga and Pilates. Honestly, it was life changing for me.

No experience but people I know have found cannabis oil very helpful for chronic pain. You need to find the specific type for the pain you have, and it doesn't have the 'getting high' ingredient. Some health food stores stock different types.

No experience but people I know have found cannabis oil very helpful for chronic pain. You need to find the specific type for the pain you have, and it doesn't have the 'getting high' ingredient

Yup can recommend. Lots of women use it for endometriosis.

There is an app called Curable (I think) that might be worth a look - all about dealing with chronic pain.

Having just done a pain management course (to help me with the rest of my pain caused by arthritis and hypermobility, not the pain that the SCS deals with) we were told not to use any of these alternative treatments. They were very clear that must do not work and relieve you of nothing but your money.

They were also very clear that things like mindfulness do not reduce the pain, they are a way of trying to help you come to terms with the pain so that it is less distressing emotionally. Time and again they told us that they couldn't do anything about the pain but could try and help us deal with it. A lot of the management relies on you not working because you need to have control over your environment - pacing plays a key part so you have to work out your baseline for each activity and then stick to it. Eg my baseline for sitting is 12 minutes, so I shouldn't sit for longer than 12 minutes without getting up, walking or laying down. Not that practical if you need to drive anywhere or work in certain jobs. Same for walking or any activity that causes you pain. We also had to work out a plan for flare ups which again is difficult if you work.

wearewellness.co.uk/physiotherapy/

Not sure whether this would be too far away for you but specialist women's health physio in Leeds. Can thoroughly recommend!

So grateful to you all for replying. I’m sorry I’m on my phone so difficult to look back and thank you individually! Thank you to Decomposingcomposers that is helpful to know that it’s helped you. I also have hypermobility, not everywhere but certainly in all lower body joints and pelvis.

So, from the suggestions above:
I definitely wish I was in the US, the pelvic pain knowledge is fantastic. I have had some internal work but she wasn’t specialised enough. I have a very very tight pelvic floor and part of the issue is that it’s locked in a contraction. I can relax it but my whole pelvis is tight and locked up, so it normally takes about 40 minutes of relaxation/meditation to get everything to relax.

I’ve tried Curable and didn’t really get on with it.

TENS/Acupuncture/CBD oil all been tried. I got no relief at all from CBD oil, TENS only works when turned up to max and obviously doesn’t help if you’re not wearing it. Acupuncture I’ve had quite a lot of but again only helpful while I’m actually having it.

Thanks Neurotrash I will explore those links.

I do pace, I have to, because otherwise I just burn out and then I can’t do anything. I just miss my life, wish I could at least sit for a bit.

Thank you so much all for replying. Some very helpful info which I will look through

Pelvic floor stuck in a contraction! and bloody OW!

I am glad to hear that you can do things to relieve, and the relaxation has worked for you.

Intense physio sounds like a good route to go with it being muscular, ligament and skeletal involvement. Can you be strapped into a position skeletally that could help? Or is your frame all lined up properly? Again, I guess a chiropractor would be able to properly assess that, or even somehow retrain. Finding the right one can bring astoundingly quick relief!

I had Feldenkrais that was the thing that finally freed me from back pain, it's a way of retraining your body and rewiring your neural pathways, the practitioner will look at how you move and design a series of gentle movements that you do so your body learns to move in a way that's right for you, and it builds your awareness of what's going on rather than just doing mindless exercises. It's also very relaxing! If you Google Feldenkrais and pelvic pain you'll find a load of articles about the principles. It's not very well known, but it's very systematic and tailored and for me has been much better than physio and osteo, which can be a bit formulaic.

So chronic hypertonicity, along the lines of this? (For primary care docs, but pretty easy read.)

www.ncbi.nlm.nih.gov/pmc/articles/PMC3498251/

Joints tense up in hypermobilty esp around the hips and pelvis because the muscles are weak. Carrying children doesn't help! I have this issue.

You must must must find which exercises you need to build those muscles to improve what's going on around there.

Pilates has been proven to be the most effective treatment for both the hypermobilty and pain in hypermobilty syndrome (from the hypermobilty website hypermobility.org/) inpersonally find a mixture of physio, Pilates and gentle lower body movement like squats and lunges, monkey movements and crab football helps me.

All These other things will help and be part of your "tool kit" but essentially it's recovering the muscles that will eventually help everything heal. (A big part of the pain toolkit.)

I have to heed my own advice; I don't find it easy and there's a bit of a flare beginning at the moment.

GeorgeFayne yes EXACTLY that! It describes my symptoms to a T. Very interesting and thanks for posting.

Neurotrash it really is hard isn’t it. I feel like it’s completely taken over my life but absolutely agree with your suggestions. I am doing yoga at the moment and I think it will do me good, although it’s too soon to see any results from it. Swimming has also helped me to recover muscle tone and had a big impact on my physical fitness.

So glad you have some helpful posts OP!

OP, you might want to read this book review and some of the associated links. It's not specific to pelvic pain but there's a lot in there about the brain being locked in to processing pain signals

slatestarcodex.com/2016/06/26/book-review-unlearn-your-pain/

@PainNoGain I hope you don’t mind the tag. I had an op which has left me with pelvic nerve pain. I’m so worn down by it and am searching for answers. I wondered if you were able to get any help or a reduction in pain? Best wishes.

Nothing to add just empathy for the back to back delivery. I had one with my first.OMFG!
Hope things get better for you in 2023 x

Just another one who'd rave about Curable. Can I ask what you didn't like about it? Sometimes people just need to tweak how they're using it or talk through something about what they've not got on with and can then get good results.

I see a women's health physio was recommended for the OP. I'd second that - there are far too few pelvic physio specialists in this country, but I'd you can find one that's where I'd start.

This thread is three years old.

Sensible to resurrect a thread if you have a similar problem to the OP and want to know if any of the things suggested to them actually worked.

@BinturongsSmellOfPopcorn thanks for the suggestion. I’m booked in with pelvic floor physio for next week so hopefully it will be helpful. Any recommendations for pelvic floor physios in London very welcome!