Feeling Alone

[jellybeanjojo]

Hi, I’ve found this group today whilst in the midst of a severe flare up of my condition. I’ve lived with bouts of pelvic pain for the last 12 years - I thought I was over the worst of it but I’ve now been bed bound for almost a week due to horrendous pain in my girlie area (feels like I’ve inserted a shard of glass 🙄)

I was told years ago that this would get worse during menopause for one reason and another but I’m sure a bad back is also in the mix somewhere. Trying to remain calm and positive I keep reminding myself that it could be worse, it could be terminal(!) but when no one I know really understands the pain I’m suffering and I can’t knock it on the head by popping a pill I do get very depressed and anxious, ive had some really dark times but also great times when I forget this thing that lurks in my body. I’m currently trying to hold on to the fact that I’ve got better before and hopefully in time this episode will come to pass also 🙏 Sending big hugs to anyone else out there that can relate to what I’m saying x

[bantam12]

Have you seen a Gynae ? Has your GP, Gynae or you considered it could be vaginal atrophy ? this causes pelvic pain, back ache, uti’s and all the rest ! Although it’s not curable it is definitely treatable.

[jellybeanjojo in reply to bantam12]

Hi, thankyou so much for replying 🥰 yes I’ve seen a gyny - had a few nerve blocks and scans but they couldn’t see anything obvious. Years ago I went to a few pain management sessions - the best advise I came away with was to take linseed daily to help keep your bowel empty to reduce pressure on the nerve. I’ve not heard that term for it before so will have a Google … thanks again 🙏

[bantam12 in reply to jellybeanjojo]

Well I could be barking up the wrong tree but your symptom of “a shard of glass” sounds oh so familiar, if VA is part of your problem something simple like Yes VM moisturiser may help but you would need a topical HRT like Vagifem or Ovestin. It took many years for me to get a diagnosis and only because I found a lady Gynae who specialises in these issues.

Good luck 🤞

[jellybeanjojo in reply to bantam12]

Thankyou 🥰

[sonnyconrad1944]

Hi, beautiful soul. I had pudendal nerve injury in 2013 and was bedridden for 4 years worse after hip surgery 2014.. In 2017 I started exercise for my vagus nerve. Cold therapy, cryotherapy, cold showers and there are many exercises for your vagus nerve. We store trauma in our hips by your psoas muscle. I don't take any prescription medication since 2021. I slowly took myself off med with daily meditation, breath work, grounding on mother earth barefoot, somatic yoga, and mostly my vagus nerve. start with your vagus nerve in your belly and its longest nerve that starts at your crown behind your ears and go down through every organ down into your pelvis. I do take CBD and mmj

[jellybeanjojo in reply to sonnyconrad1944]

Thankyou so much, i will research 🥰 I haven’t needed meds for several years but have had to grab my box of Nortriptyline these past few days. I think I remember being told about stored trauma? It’s a huge comfort to know there are other ladies out there that understand what I’m saying. The pain isn’t ’on me’, ie sore skin etc, it’s ’in me’ - nerve pain. I explain to my friends that the pain is the same as if you had a dodgy tooth … nothing one minute and then BAM, a lightening bolt of pain right up through me the next. I’ve been stuck on the landing on my top toes several times over the last few days. Just to pull my leg through to take a step can be excruciating. With any luck things will settle again as quickly as they have flared up ….. I would not wish this on my worst enemy and can relate to how someone’s mental health can deteriorate when suffering from any constant pain 🙏

[Sammy2005 in reply to sonnyconrad1944]

Hi Sonny Have just read your reply to Jellybean can you advise how you exercised vagus nerve for pelvis please ..

[bassets]

Hope you can get past this - best wishes.

[jellybeanjojo in reply to bassets]

Thank you 🙏

[Hidden]

I understand how isolating the pains can be. Especially when it seems like there is no-one that understands. My pains are in the same area and on my bad days it's feeling like I'm being stabbed in that area with something sharp and jagged whilst my body is cramping around it.

I hope that the pains pass for you soon, as you've mentioned you've got better before and you will again, even if it doesn't feel like it. But I'm happy to lend an ear and chat if you need someone to talk too xXx

[jellybeanjojo in reply to Hidden]

Thankyou, so sorry to hear you’re in a bad way too. Likewise, always happy to talk and listen if you’re having a rough time x 🥰

[Aprilbaby24]

poor you xx it truly is a horrible pain that nobody’s can relate to, unless they suffer too. I’ve just had my first epidural to help with pain and it made it 10 times worse!! Plus I started bleeding and it’s been 10 years since I stopped my cycle!!! It brings dark and lonely feelings, I agree. Lots of love xxx

[jellybeanjojo in reply to Aprilbaby24]

So sorry to hear that 🥰 I only found this group yesterday and already I’m realising that there are lots of women out there suffering behind closed doors. I count myself lucky as I’m self employed - if I had to crawl into an office or explain myself to colleagues the pressure would be immense. Always here if anybody wants to vent - I know I need to, even with a supportive partner. I think you really need to connect with people in your own club! Sending healing hugs to you and any other sufferers out there looking for someone that can say ‘yeah, I totally understand and it’s really shite isn’t it!!’

[Aprilbaby24 in reply to jellybeanjojo]

Thank you… it’s tough being optimistic sometimes xxx

[jellybeanjojo in reply to Aprilbaby24]

Absolutely, but I’m realising that we’re not alone. Don’t give up. Do you take meds? My Nortriptyline has really helped these last 48 hours. I’m also trying to work on the prevention side, rather than cure? I know I sit at my desk too much so will try and do something about it. It’s only a small change but it may have big results 🙏 is there anything in particular that you can relate your pain to? We’re not going to win this thing over night but little steps in the right direction is all I’m looking for at the moment. Keep positive flower xxx

[RobertVerde]

You aren't alone - there are lots of us out there suffering from PN. It takes over your life and no one understands what you are going through unless they have experienced it as well. I suggest you find a good Physical Therapist. I was lucky and there is a local person close by me that literally saved my life. Here is a link to a site with information you will want to read: pudendalhope.info/ I also suggest you get this book: A Headache in the Pelvis". Its has an amazing amount of information that you need to know. Medications are important: check out lyrica, gabapentin, alpha lipoic acid, etc. There is a solution - you just need to figure it out! Don't necessarily trust doctors - trust your instincts! Good luck in your journey!

[jellybeanjojo in reply to RobertVerde]

Thankyou so much, and sorry to hear you’ve had such an awful time too. I definitely will look up everything you have taken the trouble to mention … thanks again x

[RobertVerde]

you are welcome. It has been a 7 year journey for me. I feel pretty normal for the most part now. I wouldn’t wish this on anyone.

[jellybeanjojo]

I feel your pain, mine started on the eve of my 40th birthday - I’m now 52. Sometimes, just sometimes I think it’s gone, that the nightmare’s over …. But then as quick as flicking a switch it’s back to haunt me.

[Robinsonred in reply to jellybeanjojo]

Mine started when I was 40,I am now 79 and am still in tremendous pain. Went to all kind of doctors. Had nerve blocks and tried everything. Nothing helps. I know I am destined to die with this condition Hope you find relief somehow. Prayers for everyone that has this horrible condition, and believe me there are thousands.

[jellybeanjojo in reply to Robinsonred]

So sorry to hear that, it is a very long time. I too have accepted the fact that this will never completely go away but I’m still trying to find my best way of dealing with the peak times of the condition. For a long time I was hopeful that I could go back to exercise classes (I loved the individual trampoline ‘jump’ classes), or ride a bike, use my rowing machine, or just go on a long walk. I’ve now accepted that this just is not possible and to accept the facts - that’s that! At my lowest points in the past I have thought about giving up but a) I’m too much of a coward and b) I have a loving family that would be a bit miffed if I were to check out early. Instead I take in rescue dogs that benefit from our rambling garden and in turn, I benefit immensely from their company and affections. Sending healing hugs to you and the thousands of other sufferers out there x