Time Chronic pelvic pain treatment evolved!

[Lovetocycle76]

As I sit here and write this it takes me back to 2002 when my problems started and it's got me thinking - all these years later and we are pretty much no further forward with treating chronic pelvic pain conditions in men and women and I've got to say I find it absolutely shocking and distressing in equal measure. I'm still seeing the same sort of treatments being discussed now that were being discussed in 2003 and yet people are still suffering from these terrible conditions and it's not right. I can only deduce that there is no money in this game for the health professionals hence the lack of sponsorship and interest in finding new avenues of treatment and tools of diagnosis. My heart goes out to all of you who are suffering from this truly terrible affliction and I hope and pray that you find success with your treatment protocol, but somehow I think it will be in spite of doctors if you do, not because of them. Too many doctors still do not have a clue about pelvic pain and this ignorance has to stop in my opinion. They should be made to learn about it. It's 2020 for goodness sake. What are your thoughts on what I have said? Thanks for reading.

[kalecolbe12]

Truer words never spoken... Thank you.. so I was wondering if any of the treatments ever did work for you?

[Lovetocycle76 in reply to kalecolbe12]

I'm worse than ever and really struggling at the moment. I'm waiting to see a specialist on November 30th. I don't hold out much hope though. Because my problems are getting worse I'm struggling with the stress and anxiety of it. I'm still none the wiser. How are you keeping? Thanks for asking.

[melodious]

I could not agree more.

When I told my gp that it felt like my pelvic floor muscles were too tight and spasming , she looked at me like I was mad. She said if anything ,urinary urgency with stress incontinence is caused by lax muscles, start kegeling.

After reading on the subject I suspect reverse kegels may be more helpful.

Made a huge mistake yesterday by lifting my 45 lb grandaughter. That has ramped the pain up even more. Not much sleep last night, even after cold and hot treatments and a long bath then painkillers.

There seems to be contradictory adivce from old school drs versus modern physios. There needs to be more open discussion about chronic pelvic pain.

[pizon]

I couldn't have said it any better myself it took me 3 yrs. to get the correct dioganist I live in the states and stopped counting after seeing 25 dr.s ....once I revived the correct dioganist I then started with a more holistic approach I have found the more the dr.s messed with me the worst I hurt 😏 I also do much yoga and meditation

[tallandsassy]

You are so right. No mainstream doctors for me. I have been on my journey since 2008 when I was diagnosed with hypertonic pelvic muscles. I have been to many pelvic PTs and tried many mind-body approaches, including a neuroplasticity program. I have made great strides in the health of my pelvic muscles but continue in the chronic pain cycle with my daily pain starting after my morning bowel movement. I am currently taking a mindfulness meditation course to improve my daily meditation. I discovered CBD oil suppositories that work and finally found a pelvic PT here in Ohio who has a unique approach to treating pelvic pain sufferers. She also suffers from pelvic pain so that empathy is wonderful. I support everyone in their pelvic pain journey.

[Lovetocycle76 in reply to tallandsassy]

Hi. Bowel movements make my pain and discomfort so much worse. Have you found out why this is?

[tallandsassy]

Yes. The puborectalis muscle, the largest of the levator ani muscles, is important in having a proper and easy bowel movement. It is like a sling around the lower rectum. There is a curve in the muscle called the anorectal angle that has to relax and somewhat straighten out when one has a bowel movement, to allow for easy defecation. So, if the puborectalis muscles is hypertonic the angle won't relax and will probably spasm, resulting in all kinds of problems with defecation. You can also have tightness anywhere in the muscle. Lucky me, I have been told by PTs that one of my problem areas is right at the anorectal angle. The things you learn about the pelvis, but I am glad I have. It helps to understand when problems arise. It is amazing what goes on in this relatively packed area. One problem in the fine tuned machinery can lead to all kinds of problems, and it is important to include the hips, glutes, etc. in your healing program. All connected to the pelvis.

[Lovetocycle76 in reply to tallandsassy]

Thank you. There is very little information regarding pain after bowel movements. I shall look into this. I hope things are improving for you.

[tallandsassy in reply to Lovetocycle76]

Your are welcome. I forgot to mention one more thing. The vagus nerve has a rectal branch and it is possible that it is being irritated with the bowel movement because of the tight muscle rubbing against the nerve.

[Skye22 in reply to tallandsassy]

Thank you for your post I was diagnosed with levator-ani syndrome, colitis and Dysfunctional bowel /bladder.

Your description of symptoms is so true. I can no longer have a normal Bowel motion as have severely compromised muscles due to adhesions. I have to rely on daily trans-anal irrigation and manual extraction. It really has become my daily routine.

While medical advancement has been slow to evolve I find I have to stand up for my consultants and specialist physio. I receive botox injections into pubirectalis muscles combined with internal/external vaginal trigger point therapy.

Treatments help me to 'manage' my symptoms as my conditions are now life long

I can reccomend that for those not satisfied with their medical care to research up to date treatments and specialists, with our health why settle for anything less. I changed hospitals and doctors to get the right care that works for me.

Sadly In many cases we have to fight for the right to be treated properly, instead of being fobbed off and ignored.

Wish everyone well with their journey and stay strong, there is good care out there!!!!!

[TTDD]

I absolutely agree.

My physical therapist is only one of two in my state to even take on this treatment.

My doctor has a long history of treating prostate patients but seems lost about my pain.

So, figuring out my next steps is up to me.

I’ve also seen this in medicine overall - too specialized, too much following the recipe. When one diagnosis evolves into something else, you have to consult another specialist. It’s aggravating and wastes so much time.

[Janebee]

Hi I think that this absolutely shocking, I am 73 and have been suffering this about 6/7yrs and all that time there have been no change in medication or anything else.

At my age I would have thought that I would be past all these Gynecology problems but I was completely wrong I would have probably have coped with all the pain if I was a lot younger but not at my age I could pull the hair out of my head,I don’t know how long I can take all this pain.

[Lovetocycle76 in reply to Janebee]

I'm so sorry to hear that. Rest assured there will be someone or something out there that will help you but I take your point. I'm terrified of getting old and dealing with these miserable problems. I hope things start to get better for you soon. Hang in there.

[Janebee in reply to Lovetocycle76]

I hope so to love I don’t know if I can take much more,the pain is really excruciating and I have no quality of life,I am in and out of bed all day long,I hope you get some kind of treatment that helps you and gives you a better quality of life.

[Lovetocycle76 in reply to Janebee]

Thank you. We live in hope. I must admit there are times when I get really low too and we must do all we can to never give up hope and keep fighting for better treatment not just for ourselves but for future sufferers. God bless you. Stay strong.

[Janebee in reply to Lovetocycle76]

I will love that’s all we can do until they look into this disease more, you stay strong to x