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[LNLPANDORAS]

am a 68 year old, once very active female who started having anal, rectal, vaginal, clitoris pain in April of 2021. Since that time I have had 15 months of pelvic floor therapy, a colonoscopy, Defecogram X-Ray and MRI, Pelvic ultrasound, several trigger point injections, several prescription meds, several different types of suppositories, creams, E Stem, TENS, 4 different nerve blocks, etc. I have seen 17 different types of doctors. I have been told that I have Hypertonic Pelvic Floor Dysfunction. Nothing has helped and the pain has gotten debilitating. Does anyone know of or had any treatment that has worked. I am at the end of my rope and feel like I am losing my mind. PLEASE SHARE!!!

Above posted posted 4 months ago. I have had several more different types of blocks blocks, more drugs, more physical therapy , botox, still no changes. I had a CT guided nerve diagnoses last week which determined that I do NOT have Pudendal Neuralgia. I don't know what to do, where go. 19 doctors haven't helped. Not sure I can make it to 69 years old. How do people find doctors who help? I'm in Alabama and have been to beents recommended Pelvic Clinic in Nashville , TN but it didn't help. Ideas?

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LNLPANDORAS

[POS24]

I have had a very similar journey to you (- 7 years of chasing pain in rectal, pelvic , vaginal area with no diagnosis. I even took early retirement to treat it . I actually did every one of the tests and treatments you did as well as alternative ones when I got desperate - It’s amazing to see your list - it’s a replica of mine !) culminating in a final vascular test before Xmas to see if it was a problem with veins in the area. This once again came back normal. At that stage I felt like giving up totally - such was the despair .

Then early in the new year , I listened to a podcast called ‘The cure for Chronic Pain ‘ which subscribes to the theory introduced by a doctor called Dr Sarno who believes that most chronic pain is neuroplastic. That is pain that persists for more than 3 months has become ‘programmed ‘ in your brain and your brain’s pain switch has not been turned off. His theory and the podcast presenter Nicole Sachs call it TM S - which has garnered some criticism . They believe ( as do many brain reprogramming therapists ) that there is a ‘type ‘ of person who develops chronic pain - A type personalities /perfectionists/ tendency to carastrophising / anxiety. They also believe that childhood experiences can make you susceptible to develop and keep in chronic pain.

( I’m not so sure about this myself and don’t follow that section of the programme which involves journaling etc . )

Once you have eliminated all potential causes and have done every test /treatment you have to accept and believe it is neuroplastic and created by your brain . It is then your task to re programme your brain to not respond to the fear/anxiety and turn off the pain responses .

It’s also called Mind Body Syndrome . It’s not in your imagination - the pain is real but it is being exacerbated by a combination of your attitude , approach and fear response.

I started a programme in January and within 2 weeks had a pain free half day ( hadn’t had that for a while ! It was amazing . Feb I had a few pain free days . This is proof that there definitely is nothing structurally wrong with your body or this would not happen . It also has changed over the year - further proof that it is neuroplastic - at some stages it went up by back and down my legs and I developed burning mouth - crazy stuff . Seemingly burning mouth is a random thing t he at happens today chronic pain sufferers?

I have had many pain free days over the last few months - it’s frustrating as it comes back but as they say it has taken you a long time to get to this state - it’s not going to unravel instantly ( for some people on that podcast it did !)

I fully believe that I have neuroplastic pain and this is important for reprogramming . I can get frustrated because typical to my personality , I went hell for leather at the new programme and expected instant results . I always want to solve things efficiently !

It is a slow process and involves graded exposure to things of which you are afraid to avoid pain . .e.g.I bought a bike and I now can cycle maybe 15 minutes . Hadn’t cycled for 7 years .

My advice to you is to suspend disbelief - you have absolutely nothing to lose only lots to gain . Having been to every doctor you can name and tried absolutely everything - I have to accept this .

I listened to all of Nicole’s podcasts and signed up to an app called ‘Curable’ - only costs 50 dollars . BTW - I have spent an absolute fortune on this thing - trips abroad to the Netherlands to a pelvic clinic - among many.

I also listen to ‘Pain free you ‘ by Dan Buglio - he does a daily message that is good .

Also buy a book called The Way Out’ by Alan Gordon - it’s very good .

I am not cured fully yet but my attitude has changed and I have stopped the chasing . That is a relief in itself .

It is small baby steps but I do believe that I will be pain free - it may not be as fast as I had thought in January but I am trying to be patient . I have no other choice .

Hope this is helpful . You may not be open to it but you sound so similar to me in your path . ( BTW - I am now 61 - have had this since I was 56)

Trish

[LNLPANDORAS in reply to POS24]

Thank you Trish. As you know from having been there, I will try will try anything including all you have mentioned. I was once a class A personality person, perfectionist. Now I am a couch potato trying not to die of a heart attack from the stress of unrelenting pain. What have I got to lose?

[Sturat]

Regards to you…I am male and certainly different in that respect but I also suffered from chronic pain in the pelvic floor which could not be found to originate from any diagnosable cause. Cymbalta worked for me. Explore that type of medication if you haven’t already.

[LNLPANDORAS in reply to Sturat]

Thanks Stuart! Unfortunately Cymbalta did not work for me, but all suggestions are appreciated.

[POS24 in reply to Sturat]

Yes - Cymbalta / Lyrica / Amytriptiline - none of these worked for me either .

[reindee]

Well, that is an interesting idea which I will try ,thank you.