Having a very hard time with this

Hi All,
I haven't posted in a while.  My tiny urban permaculture backyard is doing very well, as are my chickens and quail.  

I've been having some health problems.  Well, I've had them a long time, but I get flare ups, especially when I'm under a lot of stress.  I just turned 65 last month, which, in and of itself, was somewhat traumatic.  Just like everyone else, I guess, I never thought I'd get old.  Even worse, I'm finally starting to show it.  I always looked a LOT younger than my actual age, (I got proofed at 45!) so it's been a blow.

I have quite a few chronic problems, mostly stemming from Ehlers-Danlos syndrome.  I deal with them as best I can, living with chronic pain.  I saw a meme the other day that blew my mind: it said, "Normal pain levels are zero.  Period.  There is no "normal" level of pain.

So none of that is why I'm writing.  I'm used to it.  What's got me really upset is something I'm having a very, very hard time dealing with emotionally.  People with hEDS (hypermobile Ehlers Danlos) often have Interstitial Cystitis as a comorbidity.  No one know why, and no one really even knows what IC is, or what causes it.  Theories abound.  It revolves around pain in and around the bladder.  When I think back on it, I've probably had it since puberty, but I didn't really have a bad flare until I was in my late 20's.  I had no GP, so I went to the walk in clinic, thinking I had a UTI.  I never had any germs, but I had terrible pain.  I went over and over, had so many people poking around down there (most of them young male residents), people walking in and out without knocking, and I was basically told (in so many words) that I was a hypochondriac, that a pelvis couldn't feel "congested", only noses got congested, etc.  I gave up.  I was almost suicidal over the pain.  

Then, one day, I was walking down an aisle of books in the library, and this bright yellow book was sticking way out.   It caught my eye, so I looked at the title, which was, "Living with Bladder Pain".  I immediately took it out, and when I got to the chapter on Interstitial Cystitis, it was a real EUREKA! moment.

Using the book's suggestions on diet changes, I was able to get rid of my pain, except for occasional flares.  I found an acupuncturist, and when I had a flare, I'd go to him, and he'd clear it up in 1 or 2 sessions.  I was pretty happy.

In my mid 30's, I develeped an anal fistula.  Only I didn't know what I had.  I just a felt a lump down there, and it hurt really bad.  Again, I went back to the clinic.  Again, I was seen over and over, by many people, mainly men.  None of them could figure out what it was, so of course, it was in my head.  One guy told me it was a pimple.   One woman stuck a needle into my perineum looking for pus.  

I finally got a nurse practitioner who looked at it and diagnosed it correctly.  She told me I needed to see a rectal surgeon, and arranged it for me.  It had taken 8 months to get a correct diagnosis.

At the time, I didn't know I could go thru as a private patient.  I didn't even know that was a "thing".  So I went thru exam after exam, with sometimes 5 or 6 male students gathered around to watch.  They stuck probes up there, fingers, etc., with me on my knees with my butt in the air.  One of them stuck a probe up there and walked out of the room, leaving me like that with the door open and people walking by.  I remember the surgeon poking my butt hole to demonstrate to a student an "anal wink".  Bet you didn't know your asshole could wink, did you?

I ended up needing 3 surgeries to fix it, with lots more exams in between.

The whole thing gave me a nervous breakdown with severe PTSD. I lost my job. I avoided doctors for a long time, except for my acupuncturist.

Fast forward 30 years to now.  I had a bad flare a year ago, but was able to find a new acupuncturist to help.  

Then, in March, I had another flare.  I tightened up my diet, and went to the acupuncturist.  She was able to help with most of it, but I'm still having residual pain in the pelvis.  I finally put 2 + 2 together, and realized that a lot of the pain was probably coming from the physical therapy exercises I've been doing for my knees, and that the pain involved muscles, ligaments and fascia.  I thik my groin is compensating for my weak hip muscles.  I told my PT about it, and asked him if he could tell if the pain was muscular.

He practically threw holy water on me, saying that was way over his head, and I needed to see a pelvic floor therapist.  I told him I think he's pushing me too hard, and that I'm compensating with muscles that shouldn't be doing the work, and they were causing a cascade of pain in the groin.   He also told me I needed to "push thru the pain".   Then he gave me more, harder exercises.

So, here's my problem: I made an appointment with the pelvic floor therapist.  However, my PTSD is back and thru the roof, because they do INTERNAL work.  Which means more probing, more shame and humiliation and embarassment, more fear and stress.  I WANT to get better.  I KNOW I should go.  and I hate myself for being such a baby about this.  Other women go, and don't seem to think anything of it.  I'm crying, shaking, my stomach is in a knot.  And the appointment isn't for a month.  

I'm so upset and angry and ashamed, and abashed and embarassed and humiliated.  It's bringing up so many feelings I thought I had worked through years ago.  I want to get better.  But I also don't want another breakdown.

Laurel wrote:
I finally put 2 + 2 together, and realized that a lot of the pain was probably coming from the physical therapy exercises I've been doing for my knees, and that the pain involved muscles, ligaments and fascia.  I thik my groin is compensating for my weak hip muscles.  I told my PT about it, and asked him if he could tell if the pain was muscular.

He practically threw holy water on me, saying that was way over his head, and I needed to see a pelvic floor therapist.  I told him I think he's pushing me too hard, and that I'm compensating with muscles that shouldn't be doing the work, and they were causing a cascade of pain in the groin.   He also told me I needed to "push thru the pain".   Then he gave me more, harder exercises.  

Personally, if I were in your boat (and I'm in an equally bad different flavored boat) I'd NOT "push through the pain." I have had enough things go on in my life that I have  learned when not to push, and I think you are at it. I'd personally skip PT for a bit OR don't do it so hard (he can't MAKE you!)  and skip the pelvic floor person till I had seen if slowing down the exercises helps the pain.

There are also other ways to work the knees that are less hard on all those muscles, I lay on my back on the floor and do my knee exercises up in the air. Gravity helps, not hinders, and knees get worked.

Debug it to see if it's muscular, then decide what to do. And don't let someone who is not in chronic pain decide where your tolerance is. People who don't live with this kind of pain REALLY don't understand how it all works together. Can you ask for another PT person? That might be an option too.

Normal pain is zero? I.... wow.... can't recall being at zero since... high school maybe. and I'm 62. If I'm under 5 on a 1-10 scale I'm ecstatic and get lots done, woot! I don't hurt!!
When you count your bad days in years, it changes your perspective....  
HUGS!

Please consider the work of the "knees over toes" guy.  He is doing fantastic things for people with knee issues, with very simple exercises that follow logical progression, and that don't hurt.  Watch his 70 something year old mother that can run now.  And I would echo what Pearl said.  I would ditch the PT guy, do the knees over toes exercises, see if that helps first, before going through another round of degrading medical exams.  If you find that you need to do the exam, remember, no matter how superior some doctors act, THEY WORK FOR YOU.  You don't have to do anything, and if the first doctor you see makes you uncomfortable, make an appt with a different one.  I've done this more times than I can count.  Maybe you would be more comfortable with an older male doctor, or with a woman.  You aren't being a baby, you're reacting to people that treated you horribly.  Medical exams can be unpleasant enough without being done by someone that clearly lacks empathy.  The right doctor is out there, you just have to keep looking.  I'm telling you this from personal experience, having been going through painful and embarrassing medical issues for just over three years now, with what seems like near-constant appts.  Best of luck to you.

I'm so sorry you went through that. What a horrendous experience.

The PT you are seeing now needs to be given the sack! I'm also having issues with PTs who think the answer to pain is more exercise. No, it isn't! I am sire none of these people have ever experienced chronic pain, because they have no idea.

I think Pearl's suggestion to change the exercises to ones that don't work those muscles to see if that helps the pain is spot on. And if it doesn't, are there any dedicated women's health clinics in your area? It might be less traumatic and less triggering if you could locate a women-only clinic. I don't know the situation in your city, but such clinics are often are no-cost or low-cost to older women or women on low incomes.

Pearl Sutton wrote:

Personally, if I were in your boat (and I'm in an equally bad different flavored boat) I'd NOT "push through the pain." I have had enough things go on in my life that I have  learned when not to push, and I think you are at it. I'd personally skip PT for a bit OR don't do it so hard (he can't MAKE you!)  and skip the pelvic floor person till I had seen if slowing down the exercises helps the pain.

There are also other ways to work the knees that are less hard on all those muscles, I lay on my back on the floor and do my knee exercises up in the air. Gravity helps, not hinders, and knees get worked.

Hi Pearl,
Yeah, I've been taking a break from the PT.  However, I do feel there is something going on internally, like tight fascia impinging on nerves, etc., because the groin pain is radiating into the the labia.  My PFT appt. isn't until June 6th, so I will see how I feel by then.  If I'm all better, I may cancel.  It's just so hard.  And I don't know which is worse, the physical pain, or the emotional anguish.  

Trace Oswald wrote:Please consider the work of the "knees over toes" guy.  He is doing fantastic things for people with knee issues, I would ditch the PT guy, do the knees over toes exercises, see if that helps first, before going through another round of degrading medical exams.  Maybe you would be more comfortable with an older male doctor, or with a woman.  You aren't being a baby, you're reacting to people that treated you horribly.  

Hi Trace,
I had gone to my GP for knee pain last summer,  Of course, he told me it was arthritis (as in, hey, you're old---it's arthritis).  I knew it wasn't, and asked for an MRI.  No deal.  Finally got him to send me for a x-ray.  Sure enough, not a trace of arthritis.  So he sent me for PT.  

Thing is, the PT actually DID help my knees a lot.   I have no pain in my knees now.  He agreed with me that it was soft tissue, probably torn meniscus in both knees.  He also said I was the most hypermobile patient he had ever seen.   He worked on my hip muscles mostly, the ones that pull the leg out to the side.  They were unbelievably weak and would actually spasm when I first started.  Also some basic core work.  

So I don't understand why he keeps pushing me to "get stronger", when I'm very happy with what I've achieved so far.  I'd just like to maintain it.

I'll take a look at the guy you recommended.  The Pelvic Floor Therapist is a woman.  I DEFINITELY feel more comfortable with a woman, especially in my nether regions.

Laurel, you aren't alone, or crazy... I have been going through my own health troubles, same region of the body. In reading up on my problems, I learned of interstitial cystitis, and wondered... symptoms are similar and difficult to pinpoint/isolate. Our urinary and lower GI systems are intertwined, and troubles with one can affect the other: dehydration, diet, irritation, constipation, intestinal gas. Your description of "congested" seems a reasonable one, if not medically accurate, and being dismissed with "yeah, that's not a thing..." just sucks.
Our "core" muscles are right there too, and some of my PT exercises for low back/hip pain are quite similar to pelvic floor exercises (Kegels?). In the midst of treatment I had a flare-up of pain in my hip, and that night at bedtime I did my PT routine (hadn't done for quite a long time) and within an hour when I woke to pee, my hip didn't hurt, AND my urinary discomfort was considerably less.

*reminder : do my PT exercises...

If the IC is still an issue, maybe you need to see a urologist? Whether it is seeing the right specialist, or right doctor - you might also need to try again, as Trace suggests, if the provider(s) aren't a good match (comfort, communication, responsiveness). I have had mostly good results within my urologist's team, but have been misunderstood by a couple in the the office, and needed to persist to get the correct information or adjustments made. I've had the best communication with the Physician's Assistants (PA's) since they have more time to listen and explain than my Doctor typically does.

If you're able to, find a private place where you could dig a hole in the ground and bury your feet in the dirt, mud or sand, whatever you could find. Pour some water over your buried feet. Sort of like when you bury your feet in sand at the beach. You plant your feet.

Do that for a bout an hour every time you feel you need to. The more you do it the less you will need to keep doing it.

The earth will restore you nerves and muscles. When I work hard labour I do this. I go to the creek or ocean shore and plant my feet about ankle deep by the shore. It is very grounding.

If you don't can't do that, could try getting a bucket that will fit your feet, put some dirt in it and bury your feet in the dirt while sitting on a comfy chair.

Another good one is Epsom salt, soak your feet for about an hour. Eat more greens, garlic, root veggies to ground you. And aloe vera juice. That will clean out your colon, anything stuck down that area. Lemon, honey, and cinnamon with water...

I'm no health expert though. I use to date a girl that had severe bladder pain, she was always depressed bc she thought she couldn't ever have children. I remember things we would try to help with the pain.

Your pain sounds like a mix of nerves and the emotions attach to past pain, which probably brings out the pain from your body. It's our bodies and minds defense mechanism in a way. Not necessarily bad, maybe your intuition is telling you that you shouldn't be there. Especially if you didn't get any good results from it. There's a difference between that and doing something that sucks but is good for you.

I get the similar feeling when I see hornets, one time I had anaphylaxis after I got stung. Everytime I see one now I feel like I'm getting hives. Over time though I learn to conquer that fear and just push through. I ain't dead yet...bring it haha. Much love and healing to you. If you need someone to talk to I'm here for ya.

I “think” your PT is driving you so hard because they are being told it is almost impossible to maintain after 65 so he wants you to get as strong as you can before the steep decline hits. To give him the benefit of the doubt for that. The “no pain no gain” is BS, but again they mostly dealing with couch potatoes that won’t push through discomfort.  But they aren’t you, you need to do what is right for you.

If you have had chronic pain for 30 years, your pain scale is probably desensitized. What you call a six, others would call a 9.

Really glad the pelvic floor doctor is feeling like a possibility for you, if these suggestions don't work in the meantime.  It sounds like having a lady doctor for this is wise and I'm glad you found one, but if you have a friend or family member you trust to go with you perhaps that could help, to feel more grounded and present and hold yourself more in the now instead of the way that past trauma can take us back in time to yucky things.

Another person sorry to hear about this situation (and also with a history of medical trauma, it took me years to go back to a medical professional and there are still things to this day that give me exactly that anguish you're talking about, like the dentist). I think it's awesome you're willing to try another doctor considering the circumstances.
I'd also repeat what others have said- the PFT works for you, and you can go in there and just talk at first, describing your symptoms (and your feelings). These therapists are not unfamiliar with trauma, and if she's not sensitive to that she is in the wrong field. You always have the right to walk away, even if at the time it feels like you're powerless. It took me longer than I'd like to admit to learn this.
I also want to add- as an older person with EDS (i'm also "the loosest" person everyone has ever seen)- age and hypermobility tends to get blamed for everything when doctors/therapists don't know what to do. But when I finally met specialists who knew their stuff it was like night and day. My hand problems used to be all 'just hypermobility arthritis' until a cartilage expert read the scans. My knee was the same ("just age" and "consider a replacement") until a really experienced orthopedic surgeon felt around, identified liquid in the joint and drained it out lickety-split. I had problems with cardiac arrythmia as a younger person that just ended in frustration until I had a GP with EDS, who said something like "of course you do, that's classic EDS". I was amazed, but at that time no doctor knew what EDS was, much less how it could affect my circulation, for example. Now my daughter has low blood pressure and IBS symptoms and her doctors immediately make the connection with her hypermobility. Nothing against your PT but if they're not working with the nerves and anatomy in the pelvic region every day, they're not going to have a good idea of how your nerves may be affected. Hopefully this PFT has that knowledge and you can look forward to learning more from her expertise.

My husband, in his 20s got told his knee pain was "aging" and he should "learn to live with it." Instead, he went to a sports physical therapist, who gave him exercises to do that alleviated the pain.

50 years later, his "aging" hasn't recurred the same way, nor in the degenerative way he was told would be his normal....

Husband's logic in going to a sports medicine therapist was that they are used to things hurting and finding non-destructive methods to work past or around the pain.

Of course, I don't know if this would work for you, but I suggest it as an alternative....

Ah, hypermobility.... My chiropractor says working on me is like adjusting Gumby.  :D

I do my exercises on the floor of his office before he works on me, stretching what I can, so he has a half a chance to get good work done on me.  It always shocks other people waiting how much I can move, and even more to realize that even with that kind of mobility I'm in more pain than you'd think a human body could tolerate.

The modern medical system (and most people) think that all people in pain are stiff as boards. Yay! I'm an outlier, AGAIN!!

Laurel: You are absolutely not alone in your pain and experiences. Too many of us are part of that world too. It sucks, and I sorrow that you are in this category too  :(

Wow, I had no idea so many people had problems "downstairs "!  It's hard enough when you have chronic pain, but having it there makes it 10 times worse.  In 2015 I tripped and ended up with a Lisfranc fracture in my left foot. I was in the hospital for 3 nights, got a fusion with 6 screws, 2 months in bed, 4 months of pt where I had to relearn how to walk, and 6 months with a cane.  And yet, I never blinked an eye.  But this thing is just beating the shit outta me.  It's really taking a toll.  It's so humiliating,  and there's stuff I haven't even mentioned that mortifies me to speak about.  It makes me feel like a freak.

Thanks for sharing,  and all your kind messages.  It helps.  Tomorrow,  I'll take a walk with my feet in the ocean.

I'm so sorry you're going through this.
Please look up. Sally k. Norton oxalates on YouTube and she has a website.  The pain you're talking about in your groin could be related to oxalates high probability. Hope this helps.

https://youtu.be/xO68JNunFHk?si=cbpSsZ7RN4HB5UP9

Interstitial Cystitis: Could Oxalates Be Making It Worse?

Laurel.

I am sorry to hear about your challenges. It happens so often to become a struggle to find respectful practices, and the ones we resonate with well.

If you have not yet, perhaps look into visceral manipulation. It is a very precise, very non invasive, self healing focused practice that can have profound effects on pelvic structures, and you may be onto something with the knee being related to visceral restriction. We see that very often.

Check out www.iahp.com to find a therapist in your area, or ask around for a good therapist.

Best in your healing world. It’s inside you- the right supportive environment and modalities will find you. You are determined in your journey and that is a major step. Chronic pain management in a natural way is a beautiful and challenging life! Thank you for being an example and advocate for yourself in it.
I also agree with the very deep grounding things. Super effective for activating our healing energies.

Hi all,
Thought I'd give you guys an update.  I've been to pelvic floor therapy 9 times; 3 more to go.  I have to say, it is is definitely one of the weirdest, most surreal experiences I have ever had.  There's nothig quite like talking about quail while someone has her finger in your vagina.  The first 2 times I went, I dissociated so bad I had to message the therapist to find out what happened and what she said.

But it did get better.  My therapist is really nice and understanding.  And she tells me I've taught her things, too.  Like when I asked her to lock the door so no one could walk in.  She said she never would have thought of that, because a lot of people feel trapped.  I also told her that I never understood why UCSF ALWAYS faces the foot end of the exam table towards the door, so that if someone does walk in while you're being examied down there, well, there you are.  All of you waving "Hi!"  So she turned the exam table around!  I couldn't believe it!  She said she had never thought of that, either!

I bring a weighted lap blanket and put it on my chest.  And a stuffed quail, because... QUAIL!  It helps me focus on something physical that isn't me.  

It's definitely helped with the worst of the symptoms, but I still have pain.  It tends to be more intermittant now, which is good.  I even have some pain free days.  But damn, I'm sore afterwards.  I go every Friday, and I went today, so I'm really feeling it now.

I'm also seeing an online therapist (head type) to help me get over the  PTSD for any future medical stuff.  She's teaching me about breathing and creating a safe space in my head; speaking up for myself, etc.

I've been doing lots of reading, and I found out some really interesting things.  Like how the pelvis stores emotions.  Apparently, there's a ton of nerves there that feed into both the sympathetic AND autonomic nervous systems at the same time.  And it's directly connected to the vagus nerve.  Having hEDS, I already have dysautonomia, which is trouble with the autonomic nervous system.  Those nerves go to the brain and connect emotions, especially negative ones like fear and shame, to the pelvic area.  So all that unresolved shit from my medical trauma got stored there.  Weird, huh?

So, it hasn't fixed me completely, but it took away the most awful of the symptoms.  I can deal with pain better than the other stuff.  I'm hoping that there will be more improvement between now and the last session.  She says we're still figuring out what will work for me.  Like everything else in my body, even my pelvis is weird.



 

My solution was to have a hysterectomy.

Best decision of my life ...

Doc said on my follow up visit, do you have any thing hanging out?  Bad joke ...