Why does it cost us so much just to get better!

[airplane]

My bone of contention is that most of us pay privately.

Like me , most can’t work because of the pain.

Even if you had medical coverage you only get 5 sessions, in Canada anyways.

5 sessions is only the beginning. Yes it truly is!

This is a true medical problem that should be covered some way or how to help us get better.

The stress of spending all of this money $1100.00 a month is causing so much anxiety for me which makes me more tense than ever. When I’m tense then the muscles in my pelvic floor become more tense. Everything just goes around in a circle.

How do you break this cycle. Using narcotics and benzodiazepines is not the answer either. Both meds used for more than 6 weeks ADDICT you mentally or physically.

I am using a tens machine to help manage the muscle and nerve pain. It helps but will reach it’s highest setting over time. Most likely in a month or 2.

Medical drs are not informed at all. Some don’t even know what a pelvic floor is. The are behind the times greatly. What would they do if their mother, sister, wife or brother had this problem?

Drs need to be informed that this is truly a medical problem. Yes it is also a problem as a stress issue. You don’t need a psychiatrist to tell you that. Just more money wasted!!!!

I was told I needed to be a more mindful person. I have always been a mindful person over my 58 years. I could teach a mindful class no problem. Lol I can journal. I’m taking that to a higher level. I am writing a book. I can colour but sitting is very hard for me to do. Everyday I try and do 6 positive things. They don’t have to be big things at all. Just a small project is a positive thing. I listened to music. All the things above are distractions. You can only distract yourself for so long.

Here are things I have tried.

1. Have a great team of a physiotherapist, chiropractor ( if needed) and your GP. Let each other know about each other.

2. Start with the basics of medicine. Blood work A to Z. Include Vit B12, D3 and Magnesium. Have a back exray done of your back and pelvis. Your gp can arrange that. See what the conclusion is.

3. If you have back issues (which many do have @ L4 and L5. You should see a chiropractor for an assessment.

4. If you have a definincy in your blood work, go see your gp and correct it.

5. Go and see a pelvic floor physiotherapist for an assessment

6. You should have some info know in order to proceed with what specialist you need to follow up with. Your gp can get you in to see any specialist. Ask him to make it a state request so you aren’t waiting weeks just to see someone.

7. We all have seen so many specialists that have ruled out big problems but no one has been able to give us the right and true answers. Very frustrating, I know!.

8. You are the ruler of the team. The others are just tools you have available and can use. Use them to their fullest!!! Push them to do their job.

9. Ask each person on your team to give you a time frame as to when your problems will lesson or be tolerable. Don’t take the answer of “ we don’t know” or “ in time we will see”. That is not an answer, just a guess! They are professionals, they should be able to give an estimate based on their prior patients and their own experiences. My chiropractor said to me that my case would be challenging but would also be fun. FUN for who? Certainly not fun for me.

10. Keep a diary of every dr’s appointment you go to, test you have had and the results. All the “ at home exercises”, you are doing. Medications you are taking for your problem. Which ones work and ones that don’t. Anything else you have tried or done pertaining to your rectal pain.

Having pelvic pain is a full time job in itself. It is exhausting and painful. It keeps you from having the life you do want to have.

Keep trying. If you can, eat well, take short walks or exercise. Make yourself join in to outside activities like seeing friends or family. Don’t isolate yourself. It will just make things worse. This group is here to answer any questions that are not being answered by the medical community. We are suffering too. You may learn or read info that may help you.

This group is where the truth and honesty is!!!!!!!!

We understand your pain and suffering. Many have tried so many things. The answer for you may be here in this wonderful group of people. N

[Konagirl60]

I can totally relate to your story. Where do you live? British Columbia?

Anyways, the GP’s have people complaining of pain and they do not take it seriously. They say we are stressed, not mindful enough ( B.S.!!! ) and we should lose weight and quit smoking. What nonsense!

People get injured with repetitive stress injuries from lifting, raking, stooping, running, gardening etc. Nerves can stretch and so can ligaments. Active people who exercise regularly can get athletic injuries.

Have you been evaluated at a good Pain Clinic yet? Which one? What did they diagnose you with? Keep the faith and have hope.

[airplane in reply to Konagirl60]

Yes, I did the pain clinic route. Had 6 treatments of lidocaine and ketamine infusions. Only one worked. Also had the prudential nerve frozen. My hips were numb but my rectum still hurt. Gabapentin is so far working the best for me. I take 2100mg a day and can go as high as 3600mg/day. I hope you find your answer. Don’t give up.

[Konagirl60 in reply to airplane]

I have had successful pudendal nerve decompression surgery. It was done 3.5 years too late because no neurosurgeon in Canada is trained to do the release surgery.

Anyways, at the same time my right pudendal nerve was being compressed, a migrated metal Filshie clip was on my rectum! That clip was finally removed last year (after 9 years of agony and terrible flares).

The second clip was removed from my ileum bowel this March. My body has been inflamed and aggravated for years. My blood pressure is high, my cholesterol is elevated BUT...due to diet, I have a low risk of having a heart attack. (5%)

A pudendal nerve block done properly with fluoroscopy guidance should calm the rectal pain. Do you know exactly what was injected? Do you have a copy of the report?

I feel for you. What is the next step?