New member looking for others like me!

[aften16]

Hello! I am new here but reaching out to others who may be experiencing some of my same symptoms. I have hypertonic pelvic floor dysfunction. My muscles are always tight and I often feel very uncomfortable in my pelvic area (pressure in my anus and vagina, lower back and hip pain, and urinary tract infection like symptoms). Can anyone else relate? And how are you coping with the daily pain? Any tips are appreciated!

[kalecolbe12]

I have same and I have found pelvic floor pt very helpful...also I take a muscle relaxer once or twice a day...and breathing and stretching are super important ....I hope you have gotten an evaluation from a pelvic floor physical therapist which is to me a very important step to take....some people on here have gotten Botox in the pelvic floor which has helped them ...you can also get a script for some Valium suppositories from your doctor they make them at a compounding pharmacy... I have gotten significantly better over the last six months... I was thinking like I needed to go to the ER the pain was so bad in the beginning... It's also important to avoid as much stress as possible... I am happy to talk to you if you want to message me anytime

[aften16 in reply to kalecolbe12]

Yes, I have been going to pelvic floor therapy. This has helped but I find that if I do not go at least every two weeks symptoms get worse. I was prescribed vaginal valium suppository but honestly was nervous to use it so I have yet to try it. I guess I'm a little wierded out having to put a muscle relaxer up there. The last time I went to therapy she used a tens unit on me to stimulate my pelvic floor muscles. The next day I felt great. No symptoms. However my reliefe was short lived once I got my period the day after that. Symptoms are amplified by 100 when I get my period it's almost debilitating the first couple days

[aften16 in reply to aften16]

Do you take an oral muscle relaxer each day? If so what is it?

[kalecolbe12 in reply to aften16]

I was taking cyclobenzaprine for 5 months 5 mg 3 times a day but tapering off now...a lot of people swear by the valium suppository at bed time although I haven't tried mine yet...I will if you will..hahaha

[aften16 in reply to kalecolbe12]

Ha ha I'm nervous. But I may just break down and try it. When it gets really bad I sometimes take a Xanax before bed and that helps. I try not to take them too much I have heard it's easy to become dependent on them.

[kalecolbe12 in reply to aften16]

I am only doing as needed...I will probs just try half the suppository because I am super sensitive to meds

[aften16 in reply to kalecolbe12]

The muscle relaxer by mouth helped you though? I think I will ask my doctor about those. Do your sympyoms get worse with your period?

[kalecolbe12 in reply to aften16]

I am post menopausal so no periods but yes the oral muscle relaxer helped a lot

[claud89 in reply to kalecolbe12]

Hi both, sorry I thought my message had been sent but I was underground and it evidently didn't work! Aften16 I have the same symptoms as you do. The 5 days before my period starts are hell. I am taking diazepam with vaginal insertion - it's been 2 months so far, no benefit whatsoever, but I've been told to be patient. I haven't had pt yet, but my first appt is booked for the 3rd of October and honestly I can't wait. My official diagnosis is chronic pelvic pain caused by hypertonus of the levator ani muscle. I think what triggered it was my massive passion for cycling (I would do 21km five days a week).

[kalecolbe12 in reply to claud89]

Yes the bicycling will trigger it unfortunately I don't think there is anyway around that

[claud89 in reply to kalecolbe12]

Apparently there are specific bike seats, but as of now I'm focused on getting better rather than go back into cycling!

[swarke22]

Hi, I have similar symptoms to you. I have had decompression bilaterally on pudendal nerve not given relief. But recently found a dr Mayo Fieldlin on utube saying these pains come from and unstable pelvis and sacroiliac joints. I’m going to go down this track when I can afford it.

[Hidden]

I also have same and recommend book by Amy Stein "Healing pelvic pain" to help both understand the condition and improve it. I wish I'd read it years ago. Also specialist women's health physiotherapist who treats pelvic floor dysfunction Lastly taking amitriptyline 50mg takes edge off pain and makes sleep possible.

[aften16 in reply to Hidden]

I will look into that book. Thank you!

[Hollyismycat]

I am new too and don't yet have a diagnosis - keep ringing GP and get a different one each time and only telephone consultations because of Covid. Mine isn't quite the same but I too have constant discomfort, cystitis like symptoms, and radiating down my legs and arms. I found the prolapse in my urethra myself - doctors kept treating me for thrush. It's not being able to sleep properly is the worst. I can really sympathise with the continual problem - it gets you down. Looking for tips as well.

[sungirl55]

How are you now after two years? I just saw your post and am dealing with the same symptoms. I've been dealing with constant pain for about eight months. Going to PT and things seem to be getting better but I wonder if I'll ever be pain free.