I have terrible rectal spasms. I have been diagnosed with pelvic floor dysfunction and intersistalcystis. I cannot have any kind of sexual

Relations, even if I am giving my husband pleasure and I become aroused I have terrible spasms. Does anyone else experience any of these symptoms? I really feel totally dysfunctional. Anyone have any advice? Thank you for listening.

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10 Replies

  • YOU must find a pudendal,Levator specialist! This develops into the most horrendous pain you will know! Yes, sex will become impossible! If you canfind no specialist,try to find my blog.Let me know your location.There are very few specialist in the world,but,you an NOW find help! God bless, Judy r

  • I have suffered with this pain for yrs with no help. I would be very interested reading yr blog!! & it would be a blessing if you would email me so we can chat. God Bless Carol.......I live in the UK, West Sussex carolmcgraw4u@gmail .com

  • Thank you for responding to me JudyRenyz. I have to admit I am very scared of all this pain. It has slowly been ruining my life and is affecting my family. I have been seeing what I have been told the best dr in yhe countrybut I still have pain. I have had trigger point injections, been in a botox trial, and have received botox injections to my anal sphincter. I don't know what else to do. They are talking more botox injections but that scares me. I am so glad there is a place like this for support, I think my IC is getting worse as well. I am seeing a therapist to try and get me through this which is embarrassing but...

    I am so grateful for you and this site. Thank you for your support. I live in PA, can you send me your blog info?

    Thanks monkeymom

  • My email is Judyrentzrents@gmail.com. You may have,as I do,Levator ani syndrome,stemming from pudendal entrapment?.I had to suffer so many years,also,unable to have a bm..I am thrilled to post any advice. Almost eight years ago,there was nothing known,even with my highly renounded DRS. You are blessed to find info!! Judy Rentz

  • Hi I have pelvic floor dysfunction too & IC. I don't get the rectal spasms but do get vulvodynia - so sex is impossible. What has helped me so far & got my pain down to manageable levels is notriptyline for the burning & physio to release my tight pelvic floor muscles plus doing exercises at home (it turned out that my pelvis was mis-aligned & my tailbone which was causing the muscular problems). I'd ask for a referral to a pelvic pain specialist,. good luck x

  • I've had IC for 20 years, and it has barely bothered me at all. Then I got a labral tear in my right hip and a sports hernia, and developed horrible spasms from the adductors through the pelvic floor right up to the ribcage. I realize my situation is a bit different, but have you been checked for any injuries? Mine all came on so suddenly I didn't rest until diagnosed, and hope that the surgeries for the injuries will fix it all, but OMG, sexual dysfunction?!? I almost killed myself.

    You're not alone.

  • You should look into two things, pudendal nerve entrapment (you can get nerve testing and pudendal blocks) and you can go to a pain mangement specialist and ask for a "ganglion of impar" block. I have pelvic floor pain stemming from a damaged tailbone, ganglion of impar block can confirm that. After that, you may need your tailbone removed or surgery to have your pudendal nerve released. I recemmend Dr Conway in NH for the later.

  • Hi Charles. I wanted to reply to your post because I, too, have a damaged tailbone; it is severely hooked. I have also recently been diagnosed with Pelvic Floor Dysfunction and Pudendal Nerve Entrapment. I have suspected that the tailbone and Pelvic/Nerve pain were related but haven't been able to get in front of the right doctor to confirm that. Reading your post gives me some hope. This is the first I've heard of the 'ganglion of impair' block, and am now going to research it and see what info I can find and if any doctors in my area perform that particular procedure. I'm sorry you are living with this awful condition, as well. I can certainly relate to your pain and discomfort. I hope that you have found some relief. Best wishes.

  • I'm having my tailbone removed on the 20th. The pain management doctor wanted to burn my ganglion of impar nerves and I didnt want to go that route.

  • Charlie,I would be interested to hear the outcome of your surgery as I am also facing the same op once my last cocvyx steroid injection wears off.Thankyou

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