Hello everyone

[Joolibee]

Hi everyone, I'm a newbie today but definitely not new to pelvic pain.  I have one sided PN, vulvadynia and coccydynia. Been on Gabapentin for ages but don't want any further increase in dosage. Been discharged from an NHS Vulval pain clinic because I had to cancel two appointments.  I find that gentle physical activity and warm water are my best friends when I have a flare up.  I am currently having private physiotherapy and chiropractic with a little success (maybe) but it is costing an arm and a leg. Muscles and trigger points are definitely involved. I'm interested to learn if anyone has found suitable seating, underwear, sportswear etc. Also wondering if anyone has tried hypnotherapy. 

[Htemo]

Hi there

I have similar pain symptoms and TPs/nerve involvement (muscle spasm/tightness possibly related to joint hypermobility). My best friend is my daily bath and gentle exercise (Pilates, swimming and cycling - yes cycling, despite the painful location! I have a Specialised women's fit saddle that is very comfortable). I have had several rounds of Botox to my spasming pf muscles, PT, accupuncture, and a lot of pain medication (including gabapentin which I didn't get on with). My latest emergency medication (for days when the flare is at its relentless worst) is duloxetine. This seems to work reasonably well and better than others with less side effects for me. I have tried selfhypnotherapy - it's similar to a new mindfulness I've recently introduced into my regime (on advice of PT). It's called Headspace and is free in the App Store if you'd like to check it out. 

Seating-wise I have a coccyx-cut out cushion that I can put on chairs/in the car/at work. Amazon have them. It is great for hard seats that make my pain worse. Also I sit on a Pilates/Swiss ball from time to time. The PT recommended sitting in a well supported position in the evening, so feet up and back straight and tummy muscles relaxed...which means I hog all the cushions!

Also gentle stretches each evening through the piriformis and quads.

I also do my own external/internal TP massage using a ball (external) and fingers (internal).

That's a lot of info, sorry! Hope some of it helps. There's more if you have any Qs...have lived with this all my life, so feel you can ask/happy to share.

Best wishes

[Joolibee in reply to Htemo]

Oh, thanks for that. We seem to have much in common. I also have acupuncture and have tried self hypnosis. Lately I am trying to do a mindfulness body scan daily, as well as gentle yoga, especially for the piriformis, glutes and quads. Cycling! Wow! I used to love cycling. I bought a split seat, but I kept slipping off it and it caused just as much pain, just in a slightly different place. Instead I do loads of walking, which I love and have been advised to do anyway. What is the make/model of your saddle? I have a therawand and have had some success with releasing the muscles myself, but I only use it in the evening in case it causes a flare up. Sleep usually takes the pain away. I've never tried Duloxetine. I was prescribed tramadol for flare ups, but it makes me feel very nauseous and doesn't usually work all that well, so I rarely use it. I have a very firm coccyx cushion, as I have struggled with squishy seats, but I think it was made for someone much larger than me and it causes pain. I've just ordered another one. My physio and chiropractor say I should avoid sitting! I actually managed it quite well for several months, but can't do it anymore due to back pain. I like to lie down with my knees up on a chair instead, but I can hardly do that at work 🙂 Anyway, I think I have found another physio nearer to where I live. Fingers crossed. I'm so sorry you've had this all your life. I've only had it for 8 years. I'll check out the Headspace app. Thank you. 

[Rosepetal60]

Hi, I have PN and my coccyx has been pulled out of alighnment. My essential cushions are a Tempur memory seat cushion. I have several around the house and a wheel chair depth one in the driving seat in my car. I have had covers with straps made for the said cushions so that I can carry the cushions cross body to help distribute the weight. Over 17 years plus the need for the Tempur memory foam seat cushions has increased. So that when I started, I could cope with one of these cushions for sitting, later increasing to two and now in recent months I need 3.  The Gell cushions do not suit me .I also have a 3 inch depth memory foam topper on my mattress. Could not manage without that either.

I also find my Lazyboy recliner (of recent years) for tall peeps means I can drop off to sleep in it for up to 2 hours so helping in catching up on sleep that I don't get during the night.   Hope this is of some help to you

[Joolibee]

Oh, thank you so much for that. I'll look into the tempur cushions. The coccyx cushions I've tried to far have tended to irritate the soft tissue to the inside of my sit bone, so have proved almost useless. Hope I don't end up having to use three. My little legs would be dangling 😊

[charlee4]

I use a foam cushion all the time I sit. I was told by a gyno urologist not to use a cushion cut out. It should cover across your butt evenly. I know the coccyx cushions were very uncomfortable to me. I hurt so bad all the time. I do not take any pain meds except

gabepentin. I stand from about 30 minutes after getting up mornings until 9:00 pm when I must go to bed and rest my back feet and legs. I go to a therapist and try to do the exercises. I try hot showers which help while I am there but begin the same pain after getting out. (I have tried ice, but it hurts so bad, I do use a hot pad) Please help if you have anything to add. I am 13 years in pain and it has grown worse over time. My pains happened after some pretty nasty falls. Have done most everything I have ever heard of except surgery.