I've had chronic pelvic pain for most my life, but I was diagnosed pcos in my teens and that's always what I attributed it to.
Last year, I was in way more pain then ever, so I was pretty certain that I had another good size cyst rupture and maybe torsion again, but all my tests came back clear, I was so upset and desperate...but a newer uro/gyn mentioned way too tight muscles like psoas and levator ani and wanted me to give physical therapy a try. Well that's like not common in the US and pretgy much anything I could find out online was about too loose muscles and post pregnancy so I was pretty skeptical. BUT IT HELPED SO MUCH. I did get some more answers in addition to pcos, but seriously PT helped reduce my everyday 7-8 pain to 1-2 most days, I never knew I could feel this good again ever, and I'm so grateful. And if I ever have a bad flare my therapist encouraged me to pop an email, which I have and she was like the greatest. I went weekly for nearly five months when we decided I had a good grasp to keep working on it by myself.
I'm so glad that this is actually a thing and it improved my life so much. Go figure. I'm not super fit. Not fat either, but she thinks since I've always had pain issues my muscles pretty much are hypertonic overextended all the time unbeknownst to me, and that exacerbated my other conditions over the years, which is why I felt this no cysts was waaaaay more painful than my two ruptured baseballs and torsion. Seriously though, go figure. I'm only 26 but glad I gave this a shot and know it's a thing now.
I am 59 and suffered with pelvic pain almost 5 years now. I have been going to physical therapy for several months now. I am wondering if you could briefly explain what stretches or methods (biofeedback etc.) your physical therapists has implemented for you? I have read from fellow sufferers that when they finally found "the right PT" that it helped them as well. there are only a handful of PT who specialize in CPPS, and I am wondering if I am heading in the right direction, or if I should pursue something different?! Any help would be greatly appreciated Best to you in your journey!
We did a lot of different things, like I was so tight I've never been able to wear tampons and my yearly paps you may as well be gutting me alive. So after assessing me, she said I definitely needed to stabilize my pelvis and build of strength, but we had to get the pain levels way down before? So I was told not to exercise as much (I was trying to get back into shape) since too much of the wrong thing would set me back into a cycle.
We started off with her stretching me out on a table usually. Myofasial release (some nice like massage and other places literal fucking hell), and ultrasound to heat release the deep muscles and scar tissue was used a lot in the beginning. And I did a lot of breathing exercises that naturally relax everything. And like bare minimum leg/hip flexor stretches, clamshells and leg lifts.
After I got a bit improvement we did a lot more internal stretching, and occasionally biofeedback. Which I kinda regret we didn't do in the beginning, because she said on the scale a normal person was 1-2 at rest, and my at rest halfway through PT was still high twenties? So what the heck was I before....For strengthening she'd give me different printouts to add to that weren't too scary for slug me, and didn't techniques to make it harder or easier in the beginning.
She did tell me some people get PTs that rely heavily on the biofeedback but I'm glad she didn't, she seemed to play it by ear on how I was feeling each day on what we would do, she really listened. Though biofeedback I felt was useful to see if what I thought was resting the muscles was actually doing that, since they weren't muscles I was too conscious of before. And some people have a lot of problems that they actually might want to start with some botox injections to force relax for a couple months? Which was pretty interesting.
After I had already started PT I did find a decent book discussing different causes of pelvic pain and different approaches you might see, and mentioned more of the PT stuff I did but couldn't find online. It was called "Pelvic Pain Explained" by Stephanie Prederghast or something similar, pretty sure I got her name wrong, but that was definitely the title. And I think it was the best easy comprehensive read on the topic I've found, and definitely would have eased my fears a bit had I found it before I signed on. Maybe give that a look?
I definitely overdo it and find myself cycling again, but PT helped so much in recognizong sooner, and enabling me to get back on track. It's a lot of patience at your own pace though, and just listening to yourself. If all you've ever known was pelvic pain like me, it's gonna take awhile and a lot of patience with yourself, but I definitely got my at the time 9-10 pain down to my more regular 5-6 zone within the first 6-8 sessions. This was much lengthier than I thought it would be, but I hope helpful for you! Let me know if you wanted to hear more about something I missed! Goodluck!!
Thank you so much for taking the time to explain what your pt is like. My experience has been very similar to yours. My sessions have varied, but have include all of the things that you mentioned: biofeedback, internal stretching, external massage, and some stretching exercises. I am supposed to do them 2x a day. Right now I'm just doing some soft yoga ones (clamshell, cat/cow, child's pose). I have also worked on diaphragmatic breathing. I am familiar with Stephanie Prendergast and subscribe to her blog from her PHRC (Pelvic Health & Rehab Center) If you do some googling you can also listen to some of her podcasts which are very current. There was just recently a pelvic health summit which she had 5 podcasts talking to various specialists--you should check it out! I actually have been diagnosed with IC (interstitial cystitis) which were mistaken for UTI (urinary tract infections) and I have had bouts with digestive issues like SIBO (small intestinal bacterial overgrowth) which apparently commonly occur together. my pain is never NOT there except when I go horizontal and am sleeping Sitting makes it worse, but usually I wake up with a low pain level, and as the day progresses, it gets worse I just keep reading, googling and researching in hope that I can find away to beat this thing! I hope that CPPS (chronic pelvic pain syndrome) will be given more attention, and that there will be some better treatments! You are young, and I am glad to hear that you have made some progress. When I have a "good" day, I always make the mistake of doing too much, and then I always pay for it the next day with a flare up! Good luck to your your journey--pelvic pain sucks!
Yeah, pretty much I had resigned myself to well, everyday sucks, but usually better first thing when I wake up and the rest of the day is trash. :/ but I do feel I'm getting my life back on track and have more energy to do more things I used to enjoy. AND it definitely is easy to get too overzealous on a good day, I don't know how many times I've ended up regretting the next day!
I'm sorry to hear about your struggle with IC. That seems really tricky, and like they can't do much about? Ironically a coworker at my new job had IC, and I was referred to her doctor when I started having bladder issues, and she's the one that pushed me to try PT. I wasnt too keen on it and declined the first few times, but my coworker with IC really helped convince me to give it a shot. She did a little PT, mostly biofeedback a long time ago, but she really thought I should keep an open mind, and try to make it past the first assessment. My regular Gyns, who are so amazing in their own right were really pleased, I guess PT isn't too well known where I'm at, but getting there. It's kind of a shame, but I guess I'm counting my lucky stars that I ended up there so young in my life. Other than the gastro I think I've found the right people after all these years to help me, and I'm really grateful...my mom never had that with her endo. Women's healthcare is very hit or miss, more often miss I feel like.
I actually struggle with SIBO as well!! Unfortunately I was allergic to the antibiotics the gastro gave me, and my insurance wouldn't approve the gentler antibiotic that targets more SIBO then everything at once. A FODMAP diet helped a little at first, but it keeps coming back, so I've tried probiotics and it seems Eh. Seems to do the trick at times too, but I keep cycling back. Do you have any advice for the SIBO? My gastro office was like the biggest shitshow since my childhood doctors, so I'm not so keen on returning for them not to help me and just tell me take the antibiotics that make my throat swell. :/
Thank you for all the encouragement ---I really hope you can find some relief for yourself <3 living can suck enough without all the extra pain on top
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Best to you in your journey!
Sitting makes it worse, but usually I wake up with a low pain level, and as the day progresses, it gets worse
Tight hamstrings and calves 
Botox injection for pelvic muscle tension and vulvodynia
Pelvic floor spasms/tightness? Try CBN patches. 
