Any Help at all.

[Breathless1943]

Hi All,Hope your all doing the best you can be. I have a massive ask here. I have been suffering Pelvic pain a few years now,with I think a little IBS mixed in. Now before I go any further,I would like to say I’ve had every test available,I’ve had 3 pain specialist,4Gastroentrologists,I’ve tried no end of medication,nerve blocks,and the list goes on. I am now currently just under my GP,as I’ve travelled all across the country for help,still I’m suffering chronic pain. My pain barrier is pretty high,BUT the pain is getting worse,and I really don’t know what else I can do. I’m getting worried I will be at a stage when my hubby will be taking me to A&E,and having done that a couple of times,I know they can’t help me.

So my big ask is,is there anyone out there with any suggestions that I could try,or even ask my GP about. I am really desperate now,so even the slightest bit of help you have,I will be very grateful for.😥

[swarke22]

Hi Breathless,

Swarke here I told you I was going to see a specialist physio. She’s treating me for Osteitis Pubis. I’ve had one session and I’ve had some relief. Long way to go but I’ve actually had some relief! Can’t wait for next session. Private message me and I will talk a bit more then.

[kalecolbe12 in reply to swarke22]

Sorry continuing I cut myself off the last post anyway so my ideas are postable where is your pain exactly and have you tried physical therapy for the pelvic floor ?also it's come to light that some people doing tibial nerve stimulation it's been helping the pelvic floor even though the needle goes in the ankle... next thing I've heard about is cryoablation where they freeze some of the nerves in there and deep ultrasound is helping a lot of people...I'm assuming you might have tried Botox in the pelvic floor which is also helping some people and I know it's all hit and miss but I'm just throwing things out there... I myself I've been going to pelvic floor physical therapy for the last 7 months once a week... And it's taking my pain down from a 12 to about 4.... I have pelvic floor dysfunction with some Prudential nerve irritation mainly the rectal inferior nerve so I was having a lot of pain after bowel movements for a long time... And that was after I've been to the emergency room and try to get help from colorectal doctors and the gastro and the pain doctor but they nobody really understands like a physical therapist for the pelvic floor... I also found cyclobenzaprine muscle relaxer very helpful when my pelvic floor muscles were super tight around the nerve of course now they've relaxed with all the stretches and breathing and physical therapy I've been doing so now it's just some irritation and pressure....and I also have gabapentin to try but I want to keep that on the shelf in case I need it.. I can manage pretty well with two ibuprofen and or a muscle relaxer...also I have compounded suppositories of lidocaine and valium which have been helpful because I can put them directly in the rectal area that is where it was hurting but I haven't needed it recently....oh and I started my own support group in my area for chronic pain and illness. Which has been great...please feel free to pm me and we can stay in touch to support each other... I am always researching and constantly educating to get to the bottom of these conditions ...there's another thing called DCT and an app called curable that I'm looking into now

[kalecolbe12]

So I read all of your post and this may be useless information to you and you may have already done it but I do want to reply since you said you're asking for any ideas...

[Breathless1943 in reply to kalecolbe12]

Hi,I’ve read your reply to Swarke,and I’m not to sure if you were referring to me in your post or not.

You refer to a pelvic floor therapist,and yes I’ve tried that,she seen me for about 3mths,then as it was private she said she no longer wanted to take my money,because my pelvic floor was very tight,and seeing as I’ve been suffering this pain for well over 10 years,it would take that amount of time,to help me.

Your explanation of yourself,sounds very much like me. The more I have a bowel movement the more pain I’m in. And yes its in my pelvic area,then travels down through my virgina,and into my back passage. So I do like the sound of the suppositories of linocain and Valium,that’s something I haven’t tried. I have had ganglion nerve blocks and I do believe they were a mixture of botox and a anaesthetic. Did no good at all. Here I would like to explain,when all this began,I never really felt a lot of pain until in the evenings,then with time it now starts from the minute I get up to when I go to bed. My usual routine is I have bowel movements after I eat,and each time the pain gets worse. If I can get to sleep,( with the help of a Temazapam) it don’t usually wake me up. I think it’s all down to being totally relaxed,then the pain subsides a bit. But who spends life doing nothing😊.

If you would have me I would love to join your group.

[Skye22 in reply to Breathless1943]

Hi there, your description of your Bowel pattern sounds a bit like my symptoms. I was diagnosed with levator ani syndrome which causes my pubirectalis muscles to "lock" in terrible painful spasms thus cutting "off" the ability to have normal Bowel function. Pain radiates through pelvic muscles down round to my rectum and down my legs.

I have the most amazing physio who I have been seeing for 4yrs. I get internal/external trigger point manipulation which definitely helps with spasms. I also get botox injections into pubirectalis muscles, lessens intensity of pain for about a couple of months.

I have multiple health problems that are all interrelated and are life long, so I am very fortunate to have a very good medical team (all female), my choice. Hope you can find treatment that works for you. Stay strong!!!

[Breathless1943 in reply to Skye22]

Thank you very much for that. I will look into what you have said.

One of the problems I have is Osteoporosis at the bottom of my spine,and the physio I had (A Woman) told me if she could have worked on me there,it would have made the world of difference,but because of the Osteoperosis she dare not work on my spine.

I do have multiple health issues,and I do believe in a way they all interact with each other. But none of my other issues cause me so much distress.

[Skye22 in reply to Breathless1943]

Sometimes I feel all consumed by pain and it gets so distressing to think is this what my life has turned into. When you have spent 2wks unable to get out of bed and you cry nonstop you feel so helpless. In a strange way having people on this forum who have the same symptoms and are going through the same ill health and understand what you are going through is a comfort, however you feel terrible that others are going through the same hell as you!!

The rare days where pain is manageable I go out for lunch with friends with my doughnut cushion in hand (only way to sit). Lunch is quicker than dinner. I always buy myself a little treat retail therapy is better than any pill!!

So we pray for these rare days where we can be a "normal" person even if it is only for a couple of hours!!! 😁