u/justagirl_7410

Hey everybody.

Im still on my PT journey trying to figure out why I get sharp pain when my bladder starts to fill or theres pressure on my tummy.

At first my PT thought my abs were too tight, but because I always had an intuition that it was something about my bladder, I asked my PT to feel internally while putting pressure externally and was finally able to determine that it’s my Levator ani (most likely my pubococcygeus) muscle that is spasming in response to bladder excursion. My running theory is that hypermobility combined with pelvic guarding from chronic pain and my bout of mono last fall caused injury via inflammation to my fascia. Fascia is the went muscle coating which is the only structure between the bladder and the LA. Myofascial mobilization of the LA flares my symptoms for a few days, so I’ve been hoping weekly sessions would work… eventually.

This week I was researching for fascial healing timelines (seems to be longer than muscle :/), and came across a reference to pelvic adhesions which are internal scar tissue that can bind organs. These are really common in endo, for big surgeries and big pelvic infections. I do not have endo, but I did have an abdominal laparoscopy last year, and abundant inflammation from yeast and allergies to the extent that I take low dose naltrexone for vulvodynia pain. Granted, my laparoscopy was not near my bladder, and I don’t know if skin deep yeast infections and allergies can cause fascial injury let alone adhesions.

Seems like treatment for adhesions is… lacking, and the PT I’m doing is probably the best shot at mobilizing the bladder and muscles for pain relief. I’m just wondering if I should try to find someone who specializes in adhesions and could give me more insights into whats possible for healing connective tissue just generally.

Has anyone dealt with anything remotely similar? I’m all ears.

Hey, I come to pelvic floor by way of two years of vulvodynia (vulvar pain) that is mostly caused by nerve damage. In the fall when I got mono, I started having pain in my vulva when my bladder was full. At the beginning, it was accompanied by urgency and pain with urination (very UTI esque) that would come and go and never tested positive as an infection, and in a few months it tapered down to just this pain with bladder fullness.

The pain happens inconsistently, but most often when there’s pressure on my abdomen (lying on my stomach or something on my lap), when my bladder is just beginning to get full, or when I drink alcohol. It feels like my bladder drops/stretches and there’s a pain around my anterior vulva that feels like a shiver/ripple/tearing/stretching. It isn’t continuous, but related directly to pressure and movement, and fully goes away when I empty my bladder or massage my abdomen.

Additional history: bilateral hip impingement with labral tears, suspected hEDS, abdominal laparoscopy last year, already tried hormone therapy, already tried valium suppositories.

Im on my 6th PT! A few at the beginning couldn’t find any hypertonicity or lack of coordination, but the last two have been working on my abs which they thought might be referring pain to my vulva. Also trying to improve movement of my obturator internus, urethra and bulbocavernosus.

I had the idea recently to have my PT feel internally while putting pressure on my full bladder to see if the pain I feel can be felt as movement. My PT could feel a contraction of my right pubococcygeus (posterior to anterior spasm) when I felt the pain, that immediately returned to baseline. Very validating!

My question is: what could be going on? Most hypertonic states are characterized by muscles in constant spasm, but mine are doing it almost like a reflex to bladder excursion. Is there a name for this? Has anyone experienced something like this? It’s possible that my history of nerve pain in my vulva has made those muscles maladaptively apprehensive if any sensation, even just my bladder expanding. If it’s that, how to I get it to relax?

My PT did some myofascial glides across my entire levator ani and I had a significant increase in bladder symptoms the following day which makes me feel like I’m on the right track.

I’ve been having what feels like jolts of pain in my vulva/urethra when my bladder gets full for about 9 months. I have a 2 year history of vulvodynia, but started getting bladder symptoms when I had mono last fall. Since then, when my bladder gets full and I put pressure on my abdomen, I have a feeling like something gives way, stretches, ripples, tears on the anterior part of my vagina.

I got a couple PT evals that said I didn’t have any PF dysfunction until I found a PT who said my abs were really tight and might be “referring pain.” Ive been stretching and massaging my abs for about 4 months, no change, the symptoms just come and go.

Yesterday I asked my PT to put pressure on my bladder with her hand in my vagina. When I felt a rip of pain, she said she could feel my pubococcygeus spasm! The pubococcygeus is part of the levator and muscle group that shares fascial connections and provides structural support to the bladder. I wonder if given my history with chronic pain, those muscles are restricting my bladder excursion in apprehension of any sensation in the area. 🤷‍♀️ I don’t usually hear people talk about muscle spasms that aren’t locked in with trigger points like in hypertonic states. Has anyone had this kind of maladaptive or responsive spasming???

All in all, it’s really validating for someone else to feel what I’m feeling and that it’s not just a referral pattern or weird nerve thing, but an actual sensation of a physical movement.

I’ve been preaching the gospel on patch testing topicals before applying to your vulva and have never gotten an adverse reaction… until today!

I had ketotifen compounded in my fav compound base a few weeks ago. Because it takes 2 weeks for the body to recognize a new contact allergen, I applied it 2 weeks ago, waited, and then applied to my arm this morning.

Within 4 hours my skin turned super red! To be clear, this is an irritant reaction, not allergic contact dermatitis, as ACD is characterized by a 2-5 day delay in skin reaction. No matter what is going on, I’m glad I didn’t apply to my vulva!

I called the compounder and asked for a sample of the base alone, to isolate if it’s the base or the med thats bothering me. It’s crazy out here everyone, take care of yourselves!

Hi here to vent another week.

I’ve been up and down over the last half a year, sometimes having pretty tolerable pain, trying PT and other random shit treatments, running down the rabbit holes, shelling out $300 a week in therapy, the whole rigmarole.

I used to have DIV and really hoped that when I got no inflammation that my pain would go away. That was over a year ago, and I’ve accepted that I’m firmly in the secondary nueroproliferative (NPV) camp now. Ive been keeping up with the flurry of research studies currently underway and in a podcast episode with Jill Krapf she put words to what I’ve been feeling for a while - that compared to the other kinds of vulvodynia we don’t really understand NPV, don’t have any good treatments other than fucking vestibulectomy, and that NPV patients deserve better. It doesn’t help me to be envious and bitter about everyone on the sub who post about their ”cure“ PT and hormonal creams stories. Even LS, which can’t be cured, is understood and has evidence based treatments. I’m sorting here twiddling my thumbs, giving PT a college try just waiting for new treatments to be developed so I can be treated. I know that there are tons of conditions like this, and I’m not alone, but it really sucks.

I haven’t really had much pain free sex, since my problems started from a rare nitrile/polyisoprene condom allergy. I was trying to be “smart” and have ”safer sex” by wearing condoms. I’m sterilized now, and don’t fuck with hormonal birth control or barriers, or pregnancy. But that doesn’t guarantee that I’ll ever have a normal sex life ever. I deserve better. I’ve worked hard enough to have earned better if it was possible. Yesterday I had sex (not even penetrative) so painful I disassociated. What a new fun experience and exploration! /s

If you’re frustrated too, would love to hear your vent. If this post is discouraging or annoying to you from where youre at in your journey, please know Im venting out of 2 years of frustration, and that this has nothing to do with you <3 Take care of yourself everyone

My PT hasn’t been able to figure out why i have pain near my urethra when my bladder is full. Sometimes it almost feels like my bladder drops and a twang of pain starting at my urethra and running backwards to my perineum, then dissipating. Sometimes it’s just pressure on my lower abdomen when my bladder is full that translates directly to pain in my vulva. I’ve had the extreme burning/urgency even occassional in the past.

I come to IC through vulvodynia caused by allergies and yeast leading to nerve pain. I got mono last fall which is when my bladder-urethra pain really started. LDN and allergen avoidance has helped but not cured my vulvodynia.

My PT was originally focused on releasing abdominus rectus and obturator internus tension but even though that’s improved, my symptoms haven’t changed. I have some back and hip problems that flare up occasionally but my vulvar symptoms don’t seem correlated.

Internal valium makes no differences. Suspect hEDS and MCAS. No relief from H1/H2 antihistamines, lactoferrin, vit D. Ive already tried estradiol and testosterone and have normal hormonal bloodwork. I am not interested in trying the IC/low histamine/oxalate diet.

Any ideas what muscles or mechanisms could be at play here? Anyone have these symptoms? What worked?

Just a sad post. Not asking for advice.

Today’s my birthday! I hadn’t been able to see my PFPT in a while, and when I went in today she told me she’s leaving the clinic to start her own private practice that won’t take insurance. I’m happy for her, she’s a great PT and I think she’ll be able to give the care she wants to working for herself. I never thought i’d go to PT regularly again until I found her to work on imbalances and tensions 5 other PTs, including prestigious physiatrists, had not found. Her clinic was 15 mins away and my coinsurance was only $100 a visit (most I’ve been to are more like $350). I have been discouraged recently that I wasn’t making any “progress” but I was emotionally prepared to go weekly for a year without giving up. PFD esp with hypermobility can be stubborn, and I was ready to go all in.

We talk often about how hard it is to find a good doctor - I’ve seen no fewer than 17 in the last 2 years, only about 5 of them actually HELPED me (shoutout to Susan, Claudia, Rajal, Ruth, and Andrew) - but SO many of my doctors have also left the practice while I was trying to work with them. In my first half year with this condition, my first three gynos left the field entirely. Currently, my specialist is out of office with no availability until January (hoping she is ok…).

Today my PT hugged me as I was leaving saying that she would find someone to take over my care, that she didn’t want me to feel like I’m in this alone and didnt want me to be dismissed by PTs again. The thing is, I dont feel like it’s personal, I just am alone. This has happened to me so many times. I’m upset mostly because it’s such a pain to research new doctors, show up and get bad care, and then get a crazy bill after. Finding a good doctor is hard luck, and then you have to start over again. This is WHY I have to read the textbooks and prescribe my own med schedules and learn diagnostics on my own microscope.

In my next trip around the sun I want to feel I can make more progress! I’ve had 2 breakthroughs in 2 years but I’m not done yet. I wont be done until I get lucky, so I have to keep trying my luck.

considering buying an OTC DHEA topical because… I haven’t tried that yet.

I was put on topical estradiol EARLY in my pain journey and used it for several months. I requested compounded E/T and used it for about a year while trying to get my pain under control. I ultimately stopped using it because I was trying to cut down on topical use to control yeast/BV last fall. No history of hormonal BC and normal bloodwork, no atrophy or lubrication/libido issues, just burny, raw, sometimes dry ish skin.

I suspect mast cell involvement in my vestibule because of my history of allergies and yeast and because LDN helps so much with my pain. My sisters both have MCAS, and I also think I have hEDS and ADHD, both connected to MCAS. My PFPT has mentioned that hormone fluctuations can trigger mast cells - seems like anything can - and I also saw a rec for systemic DHEA as part of MCAS supplements.

I want to know - if I’ve tried E and T before, could DHEA help? Does DHEA actually help MCAS?

Hey everyone. Here again with skin questions.

I’ve been going to PFPT for the last 4 months (this is my 3rd attempt at PT), looking to leave no stone unturned for what could be contributing to my pain. If I don’t improve in a year, I will conclude that PFD isn’t a main cause. Nueroproliferative vulvodynia following chronic allergic contact dermatitis and yeast is my main diagnosis.

Recently my PT has been commenting on my skin appearance, first saying that my skin seemed dry and today saying that it seemed “red and irritated.” I have had increasingly dry skin on my entire body, so switched to a hyaluronic acid lube that makes me feel like I’m dripping moisture after sex. I tried some H1/H2 antihistamines in case it might be mast cell related and didn’t tolerate them well, so am trialing a quercetin product now. I've done months of E/T topicals without benefit in the past, normal bloodwork, no history of hormonal birth control.

I had brief/painless PIV sex with hyaluronic acid the night before she said I looked ”red and irritated.” Is it normal to appear a little chafed after friction? I wonder if I should see a dermatologist to get a biopsy to rule out LS (even though I have no itching, unprovoked pain, or structural changes), or just talk about if my apparently dry/irritated skin post sex is normal. The last time (2 years ago) a PT told me my skin looked dry I was in the middle of a massive allergic contact derm episode so it’s hard for me to brush this off.

Any thoughts would be helpful.

Hey, ive been thinking about getting a new moisturizer for the past month or so. I have nerve/PF pain around my vestibule and just inside my vagina that developed from inflammatory yeast/allergies over two years ago. I’ve made a lot of progress and am looking for ways to kick the last 5% of my pain that comes back during urination and sex.

My PFPT thought my vagina seemed dry at my last session and gave me free hyaluronic acid moisturizer samples. The last time a PT commented unsolicitedly about my dryness was at the height of experiencing chronic allergic contact dermatitis. Obviously, moisturizer wasn’t what I needed (allergen avoidance and steroids were). I have generally tried to reduce the products I use on my vulva/vagina since I’m prone to infections and have very sensitive skin. I’ve used estradiol and testosterone for months at a time with no effects, and my hormone bloodwork is normal (no HBC history). No problem getting wet, but feel more or less dry at different times in my menstrual cycle which I think is normal.

Is it possible that I just have dry skin like everywhere else on my body? I use an oil cleanser and lotion on my face, maybe I need a dry skin care routine for my vulva too to give it the best chance of withstanding irritation/sensitivity.

Do other young people with sufficient hormones use moisturizer long term or is this a marketing scam to get me to spend money on overpriced goop?