I’m running out of ideas. Please help.

[airplane]

Other than surgery, I have tried everything from A to Z . Natural and chemical. I have seen comments on hear that so many of you have endured multiply surgeries to no avail. There has to ba a solution out there with all of this causing the same symptoms. The medical community either doesn’t care or it is not a large problem in numbers to warrant special attention.

People with hernias at L3,4and 5 have rectal pain because a large nerve runs from that area to the rectum. People who have coccyx problems have rectal pain. Mothers having babies can end up with rectal pain and I’m sure other conditions cause rectal pain. That is a large body of people both men and women. Here in Canada Drs and physiotherapists are just now learning about the pelvic floor. Humans have a pelvic floor for 100’s

of year if not more. Why do patients have to be the ones on a support group trying to give each other ideas. Is that not what drs are for.

This group is amazing but it seems we are all still

suffering. Is there a common denominator we are missing.

Why can’t this be solved?

Keep talking, researching and trying new ideas. . I bet the answer is right under our noses. If you ask me too many different specialists are involved. Just my option because I have seen them all with no answer.

I applaud everyone for sticking this out. I know some days are a bloody hell.

Any new theories are most greatly welcome.

All of you are my hero’s. N❤️

[Hidden]

You've said it all. Why are we here looking for answers from none specialist,because we are the only people who can understand what hell it is to be in daily chronic pain.😥. I've researched,been from one side of the country to the other,had unrelenting tests,diets,you name it I've tried it.

Yet I'm still like you airplane suffering. The pain I suffered last night was excruciating,but it's no good going to A&E, because it's just morphine then home and back to square one. So I suffer.

Sorry for the rant,but I probably speak for you all. It's really getting me down,pain also gets you into the depths of depression.

[airplane in reply to Hidden]

Gemini171

Well you said it all!!! What is wrong with our professionals. If it was one of their family members , I wonder what they would do? Depression for me is the worst. It is just a big cycle we are all on. One feeds the other.

Keep trying. There is an answer out there. Love N❤️

[Cardinal in reply to airplane]

Even if it were a family member, they wouldn't be able to help. I've had boyfriends who are neurologists, anesthesiologists, e.r. doctors, etc who wanted me to get better and tried to think of ideas but just didn't have the knowledge. The thing that works best for me is low-dose methadone. Not many side effects (mostly more sweating).

[Debra13 in reply to Hidden]

I’m with you. I feel the answer is there but even though we all suffer the same our treatments that we try never work the same for everyone. Has anyone else noticed this. Just know this. We have to keep fighting as a community here to get it looked at more and not swept under the rug. Just recently my friend was told this was in her head. Good lord I haven’t heard those words come out of a doctors mouth in years. We still need to educate these doctors. Amazing. God bless us all who are suffering. You are not alone. Deb 🤗

[Smollyholly]

Hi As you know Ive had this terrible pain since a pelvic repair 14 months ago Ive been going to a brilliant physio who has told me not to use a stim to encourage pelvic floor exercises as this will aggravate the nerve This pain has probably originated from a disc in my back brought on by the position on the operating table ( head down and legs up) and then roughly manhandled to abduct my legs to insert into stirrups I had the same horrible pain but not so severe after the physio touched my back so know this to be true Of course the surgeon may have also done something wrong at my operation so I still take Gabapentin 900mgs per day plus codydramol if extremely bad but dont want to take more Gabapentin as the withdrawal affects are so bad I also need to find out what went wrong at this operation and will seek legal advice if I need to

I started doing weekly Pilates which is a gentle exercise and try to walk at leadt 5000 steps daily or more if I can Have seen a colorectal consultant who said I had no hernias or bleeding to account for this pain and all doctors say the op has caused it so I just hope if I can get fitter that this pain will disappear eventually -well I hope so

Thanks for everyones help on this blog

[airplane in reply to Smollyholly]

Smollyholly

Hi. It may definitely be related to your back. What is Codydramol? I have never heard of that before.

Keep trying. Pilates is a great low impact all over body exercise. N

[Smollyholly in reply to airplane]

Codydramol is paracetamol 500mgs and dihydricodeine 10 mgs or df118 which used to be a controlled drug Look up BNF (British National Formula) Doctors handbook Cocodamol is not so strong used to be Distalgesic I think but may be wrong

[airplane in reply to Smollyholly]

Thank you former your answer. It is not available in Canada. It may be listed under a different name. I’ll ask my dr. N

[chatelain in reply to Smollyholly]

Careful about too much walking. It can make things a bit worse. Swimming is a super form of exercise to help relieve chronic pelvic pain - gentle breast stroke I find to be the most effective. A good book to get your hands on is "A Headache in the Pelvis" Lots of good ideas in there. (available on Amazon)

[airplane in reply to chatelain]

Thank you chatelan. I have that book. Tried some things that I am capable told doing. Hard to get to a pool but will try. N

[pizon in reply to airplane]

Also the book that has helped me more then any other is “Healing Pelvic Pain” by Amy Stein and meditation they are truly my medicines I stoped counting after seeing 25 dr.’s ....it was the only thing (tried over 10 medications that gave me very bad side effects) that got me off of the sofa I was there for 2 years this is a horrid condition I had surgery via a uro gynecologist and it corrected my problem however it left me with a higher level of pain ...I also saw a chiropractor that helped very much it turns out (again after years of suffering with no diagnosis) that my psoas muscle was compressing against the nerves which causes the pundael nerve to lack blood flow then thru cronic pain physical therapy taught me that when one nerve gets upset others will follow which in turn causes even more pain...some people also find help with the curable app...sorry for the long post but there is no real answer..I found that if you see a pelvic pain dr. Here in the states there are only a handful but at least the understand this illness ...again I can only speak fo my recovery if you want to call it that I believe it is a very individual healing I also believe in my life I am as better as I am going to get I can sit up to 2 hours now and walk I also do yoga try the “Your Pace yoga” by Dustainne Miller I also take the herbs valerian root and hops via working with an herbalist...again the medical dr.’s have not worked for me I got very depressed not only from the pain but being treated as a person looking for drugs in America there is a big push not to prescribe opioids and it has truly hurt a lot of people that truly need them I wish you all luck and health...again I am not a dr. And am NOT advising to not use medication only telling my story

[Pattimoe]

Well I haven’t posted my bio yet. But just know that you are not alone! I have been suffering with pelvic pain for over eight years now. Multiple therapies, medications, so called doctors, with no relief until the past year. My gynecologist sent me to a urogynocologist, And she has helped me with intravaginal injections to levator ani muscle. It relieves my pain in a couple of weeks at least 50%! Now it’s time for a new one because the last one she gave me did not hit the right spot. I requested “pictures” of my pelvis since I haven’t had any for seven years and she said oh sure. A radiologist specialist she sent them to requested more to zoom in on my “pain area”. Like you all I am amazed that more doctors are not addressing the pelvis! WTH? We all have one – I read somewhere 6 million people are reported suffering with pain in this area! Is this a conspiracy or what? I will post again when I get some results from these next images. Hang in there everybody. Love and peace

[hill-top in reply to Pattimoe]

Where are you Pattimoe, countrywise. Your injections sound interesting. Was this for rectal pain? Seems here in UK if not pudendal nerve and you don't want stim there is nothing to be done but pain management, which I found not particularly helpful as had done all my research; and meds which I don't even know to be having any effect as anal sphincter pain so bad. Walking aggravates the pain which is devastating as was a great outdoor person until this hit me out of the blue some 6 yrs ago. Like everyone, have been the rounds, orthodox and alternative and with no relief. Keep the research going as I agree there must be a precise cause. Chronic pelvic pain is just far too broad and means nothing diagnostically in terms of proper treatment.

Keep up your spirits everyone! Hilltop.

[Pattimoe in reply to hill-top]

I’ve really not been officially diagnosed! This Dr. says “levator ani pain” and the injections are trigger point. I have diagnosed myself after much research and multiple therapists guesses. There are no doctors in Indiana who treat this pelvic pain. I found Dr. Dellon on this site and I may go there, since I’m desperate from 8 yrs of pain while sitting! So sorry about your pain, Hill-top

[anne77 in reply to Pattimoe]

OMG, I was living in Indiana when my pain began and I went to a Colorectal Dr., and he diagnosed me with "Levator Ani pain" as well! He acted like it wasn't any big deal and said that it might just go away as quickly as it came on. Well after 3 yrs. of awful pain, visiting 4 different Urogynecologists, I was told that it most likely was pudendal neuralgia. I tried many different meds, but nothing helped me all that much, and I had so many side effects. FINALLY, I went to a pain management doctor, and he prescribed Lyrica. I am taking 75mg 3x day, and it is working really well, and for once, I am having no side effects. I had tried the "sister" drug, gabapentin, so I was so surprised! My pain level is very low now, so I am praying it continues to work. I have read about Dr. Dellon as well as Dr. Hibner ( in Phoenix). Please keep us posted, and I hope you find some relief soon

[peters1]

Pyo exercise is great as well because we tend to hold our bottoms so tight to try to guard the pain that we make things worse. Exercise that work for my are the Pyo and (combo of pilates and yoga)and the stair master actually is better for me than walking since it is only a marching motion. I pray that God deliver you from this affliction as He is who I depend on totally. He has given me this group and hope of complete healing and I know He can do the same for all of you.

[airplane in reply to peters1]

Peters1

I agree with you totally about holding tension because of pain in the pelvic area. Of course we are tense and hold that area tight. I have learned that my pain is less when being distracted or doing something I really enjoy. Sex terrifies me I am starting to wonder if that may help. Positivity also helps. We are all on a negative wheel If we try more positive thought and activities maybe, maybe the whelk will slowly move to a positive wheel. Let’s hope.n

[peters1]

I was concerned about sex but it actually relieves the discomfort...try getting help with deep stretches at least once a week it definitely helps. If you find that it makes things worse don't give up and stop the deep stretches...it really ends up helping the area feel better.

[PurpleTea]

Have you tried elevating your feet when you have a bowel movement? There is a video on YouTube called squatty potty which can help you be in the right position when you have a BM. This can also be done with small step. Not sure if this would be any help but I think anything is worth a try.

[Pattimoe]

Hello all! I said I will keep you updated, but there isn’t really much to report here. they found no problems on the imaging and my uro gyno said that I’ve had all the imaging there is. So still no answers, but I have to admit the injections are helping. I still can’t sit for long periods of time but Ive learned how to live with this pain. Staying active helps me so I will continue that. Love to you all💓

[Lexi1221 in reply to Pattimoe]

What injections do you get?

[Pattimoe in reply to Lexi1221]

I believe it’s lidocane and something else. My dr calls them trigger point injections to the levator ani

[Lexi1221 in reply to Pattimoe]

I’ve gotten trigger pt injections for over 10 years.. where do they do them? For me it’s always been internal. Was suppose to help with the internal PT. My pain is vaginal and rectal. The injections were always vaginal. Unfortunately for me, and very rare, my injections made me ALOT worse in September.Basically iput me in bed. I can walk around to an extent. Need to push myself I found this guy who does trigger point injections guided by an ultrasound.. shots external. For me and because I’ve had it so long it will take a number of visits. This kind of procedure is called Hydrodysection. Look it up, it’s interesting.

Marcia

[Pattimoe]

Thanks Lexi! Never heard of that before.

[pizon]

What amazes me is that the dr.s hear in the states are not accountable for their actions if they misdiagnosed you then they try another pill if they make a mistake during surgery or give you a drug that you have a reaction to they truly do not care…I am done with them I try to go with an herbalist and have a primary care dr. That I like but other then that I do not bother with them any more again this is my personal opinion…if it was not for this group and meeting some very knowledgeable people and my own personal research I would still be on the sofa in pain…I have pain every day but have learned through yoga, meditation and herbs how to live with it and have accepted there are things I can no longer do but in my world the medical profession made me worse again I am only speaking of my personal experiences I found the natural ways worked best for me..may you all find peace and health one way or another