Checking in

[kalecolbe12]

Hello everyone ,I've been on this site for a year since I started having my neuromuscular pelvic floor dysfunction.I would love to know people's journeys that you've been on and what has worked and what hasn't worked... if it's ongoing or if it has resolved... As for me I did the usual round the doctors who didn't know what was going on and finally my physicians assistant figured I needed a pelvic floor therapist and gave me cyclobenzaprine and referred me to a pelvic floor PT both of which helped enormously but that's after I'd been to four different specialist and ironically the physician's assistant was the one who got me help. So I used to cyclobenzaprine for 3 months I started feeling a lot better especially after 3 months of weekly pelvic floor physical therapy and now I go once every two weeks or once a month depending on how I am doing.i take the cyclobenzaprine if I have a flare up now but I can go for a week without it now and then a bowel movement might start it up(mine is mainly inferior rectal branch of the pudental nerve that is irritated)or stress and I believe stress is the main component.I believe mine started with as my pt calls it ,butt clenching because of being in a very stressful situation long term.So I figure it took a long time to get this way so it will take a long time to improve it.I do find that the stretching and diaphragmatic breathing helps a lot too and I am probably going to try some yoga classes at my local gym....I also use lidocaine/valium suppositories if I need them.The pain doc gave me gabapentin to try but as yet I haven't tried it since I do ok with the cyclobenzaprine but I will probably try it and see.I know some of you are on cymbalta,Lyrica ,Amitryptiline etc.I also know some of you have tried Botox ,nerve blocks etc and also some of you have had surgery and ablation of the nerve.I also would like to know how long people have had the various forms of pelvic issues and what kind ?Lastly,has anyone tried David McCoids dct programme with any success and anything else you all have tried on this journey,thanks,Audrey

[Pinky2233]

Have you tried the yoga poses “pigeon pose” or “double log” pose? 2-3 times a day helps for Re-training those muscles

your pt might suggest a yogi expert for a private who understands getting to these issues so you can work on your own w out the other poses

Has any PT taught you how to reach the muscles yourself for self release? It is possible to release trigger points in the muscles yourself at the moment it engages or goes into spasm. A quick thumb release at a restaurant restroom and back to dinner is doable if a PT shows you what muscles.

[kalecolbe12 in reply to Pinky2233]

Yes I've been going to pelvic floor physical therapy for 7 months once a week but the nerve is hypersensitive rectally so I can't tolerate internal rectally but she is doing pudendal nerve glides externally which reach internally without directly being on the nerve they have helped a lot... She also does vaginal myofascial release which reaches the rectal area... Also yes I do those poses already hand stretches also diaphramic breathing

[London80]

I haven’t heard of that programme but what worked for me was the Curable app. My pelvic pain is now gone. The work is ongoing to manage my stress levels, which I now believe were the main cause of the pain, but the pain is no longer there. So many people have been helped by the app

[kalecolbe12 in reply to London80]

How much does the curable program cost?Also what did it do for your pelvic pain?

[London80 in reply to kalecolbe12]

It cost about £45 (I’m in the UK) for a year. The pain started to reduce very soon after starting the app - listening to various education audios based on the latest neuroscience research, listening to recovery stories, doing various brain training exercises, visualisations, meditations and writing exercises. I honestly think that if I hadn’t found the app (or heard about Dr John Sarno) I would still be off work and in ridiculous pain. Please try it and let me know how you get on

[kalecolbe12 in reply to London80]

Thanks!! Will try it

[Bestill]

Hello. Mine has been going on for 13 months now. I am currently taking 600 mg of Lyrica, 60 mg. Of Cymbalta, and for the last four weeks started cyclobenzaprine at 10 mg at night. I also did a nerve block vaginally bilateral 3 1/2 weeks ago. I truly think that mine is calming down some thank God. After bowel movement is when mine is excruciating, but it seems to be going away a little faster. I am not happy with the amount of pain that I feel after a bowel movement, but I feel like I can live with it a little better if I know it’s going to go away pretty quickly. I go for my second nerve block in two days. I did do physical therapy for seven weeks and saw three different therapist and feel that Was not the right therapy. On the seventh week, with my third therapist, she told me she thought it was my fibroid that was protruding through my bladder. I’ve seen two gynecologist that doesn’t seem to think that that’s the case, so I’m just not sure. I am currently seeing a pelvic Pain gynecologist. He is also the one that is doing the blocks. Just in the last week, I have started to feel some relief. I am very thankful for that.

[kalecolbe12 in reply to Bestill]

Yes I have pain after bowel movements too....sometimes it goes away fast after the bowel movement and sometimes I have pressure all day but not as much pain as I used to have but definitely pressure there... Thank God for the cyclobenzaprine muscle relaxer which really helps I'm glad the shots are working for you that seems to be very hit-and-miss with a lot of people I've been thinking about Botox with us hit and miss to so since I'm not bad most of the time and I've definitely seen an improvement I'm just going to carry on this course mine's been about 14 months and most people say it takes two to three years I am going to keep on the cyclobenzaprine twice a day and I'm going to start the gabapentin at night which is similar to Lyrica I believe what I'm hearing really good things about the cymbalta also I'm hearing about cryoablation of the pudendal nerve and also tibial nerve stimulation but honestly I'm scared to try anything else because I've made some progress and I don't want to undo it all. Have you tried a TENS unit with any help and I'm also hearing and personal ultrasounds help but as you say once you've made some improvement it's scary to try anything else

[smg60]

After years of agonizing pain every time I peed, and seeing a Pelvic Floor Physiotherapist for 8 sessions (didn't really help), I had surgery for a prolapsed bladder. But after a few months, the pain returned. I tried Gabapentin and finally found some relief. I worked my way up to 2300 mg/day but eventually the pain started coming back. I was then diagnosed as having I.C. In addition to the Gabapentin, I tried different pain meds (Lyrica - great for pain, but when you forget your own address...), Elmiron, Nortriptyline - all with side effects I just could't live with). Also changed my diet eliminating things like caffeine, juices, tomatoes, pineapple, citrus fruits, carbonated beverages, anything spicy, etc. Finally I got in to see the specialist (urogynecologist) who said I did NOT have I.C. She said my pelvic floor muscle was spasming and for some reason the bladder was "setting it off". She said I should stay on the Gabapentin + she also prescribed 10 mg Cyclopenzaprine 3 times a day. It was miraculous - the pain was gone. Next time I saw her, I told her she was my hero. I have lowered by Gabapentin slightly (2100 mg/day).

[kalecolbe12 in reply to smg60]

I am on cyclobenzaprine also ...it stops the spasming...I am also trying gabapentin for the first time today.... Someone else told me that magnesium glycinate is good for spasms and pain.... I have had the pelvic floor dysfunction for about 14 months and I know your pain because I went to the emergency room it was so bad.... are you doing stretches and deep breathing? I only say that because I think at some point when you want to start coming off the meds the breathing and stretching sets a good platform. I also see a pelvic floor therapist every two weeks where she ch cheks internally for trigger points and she does nerve glides

[kalecolbe12 in reply to smg60]

I forgot to say I have been seen the pelvic floor therapist for 8 months and it did help me a lot and I wasn't done any meds for about a month but I go every two weeks now and the pain just comes and goes now it's crazy... I know for sure stress sets it off though