After 5 Years I have found 'some' relief from the pain of my Pelvic Floor Dysfunction

A little about my history: I started having strange rectal pain with constipation back in 2009. It gradually got so bad that I was taken to the ER on 3 occasions because the pain was just that severe. I have a pretty high pain tolerance but these flare ups were on another level. I couldn't walk, sit, stand or urinate. I didn't know what was wrong other than I had a lot of pain. Pain like someone had a blunt object in my rectum and was pushing against the side of the walls with all their might. The pain radiated around to my groin area and down my leg. I also had pain and pulling in my back during bowel movements. Most times I couldn’t have a bowel movement without a fleet enema but after I went I would be in pain for hours. It was excruciating and I was depressed and feeling hopeless. All the ER doctors wanted to do was do a physical examination (fingers in rectum) but I refused to let them touch me. The pain was so severe I was vomiting and on one occasion almost passed out from the pain. After numerous disappointing doctor visits and several wrong diagnoses, I was told I had Levator Ani Syndrome and put on muscle relaxers and Hydrocodone by a colon rectal surgeon. It didn't help – not to mention all they told me was that my muscles were abnormally tight. But other than that I didn't even know what having Levator Syndrome meant. One day during my web research I ran across a patient who had seen a Urogynecologist. I had never heard of one before but I made an appointment. The was so sympathetic and understanding. He said, "It looks like everyone is telling you what you have but not what to do about it". I felt comfortable with his knowledge and began treatment. The first thing he did was send me to a pelvic floor therapist. Not just a physical therapist that also does pelvic floor therapy but an actual specialist here in Indianapolis. She taught me about pelvic lesions, muscle spasms, IC and what causes them all. She did internal work on my actual trigger point and she did visceral work to try and loosen my adhesions.

It helped to the point where at least I wasn't missing work (I had previously been using FMLA) and I could somewhat function throughout the day. I also had trigger point injections and that gave me even more relief. But the knowledge I gained really helped me to get to the source of what was causing my spasms which is what we all really want to know right?

Past surgeries, past injuries long with stress has given me this chronic condition. I had a myomectomy (fibroid removal) in 2000. Then a uterine fibroid embolization in 2005. I also had old tailbone injury from a fall on the ice during childhood. On top of that, I found I exasperated the problem because I had developed a "guarding" position whenever I felt anxious or stressed or was in a situation where I felt uncomfortable. Something I had learned from childhood, more than likely a result of the verbal and emotional abuse I endured from my father. So now that my pelvic area was in a constant spasm with adhesions from past surgeries, I had to find out how to un-do the damage.

These 10 things have helped me tremendously:

1. As much as you can realistically do so, get rid of or minimize stress and anxiety. Relax! Pay attention to how you sit and how you hold your pelvic area. Breathe deeply and relax your pelvic floor

2. Daily stretch the pelvic area using yoga poses or just common sense floor stretches (2x a day if possible)

3. (for women) Purchase a vaginal dilator (even if the spasm does not originate in the vagina). Manually stretch the vagina on all sides twice daily for at least 10-15 minutes during times when you are not wound up. You need to be relaxed when you do this, perhaps after a bath

4. If you are overweight, lose weight. (after a 20 lb weight loss my symptoms improved almost 50%)

5. Find a prescription combo that works for you. I take 5mg Flexeril before bed. When I feel sore I take one 800mg Ibuprofen and one 500mg Acetaminophen. It knocks my pain out completely

6. Avoid straining when having a bowel movement. I have a prescription for Miralax and take it nightly. Also purchase a squatty potty to put your body in the proper alignment for bowel movements

7. Take hot baths as often as your schedule allows you to, but try every night before you go to bed even if it's only 10 minutes

8. If you can afford it or have insurance find a pelvic floor specialist

9. If you have issues from childhood, i.e. sexual, verbal, mental, emotional abuse and can afford to do so, find a therapist to work these issues out

10. Stay positive. This is not an overnight fix but realizing it can get better does wonders for your pain and your outlook

Today I experience 'soreness', not pain. I've made great progress. I would love to go into each of the 10 steps in detail but I don't want to make this post any longer than it has to be. If anyone would like to talk to me personally or ask questions you can reach me at catreceyoung at yahoo dot com.

12 Replies

  • Interesting post thank you...

  • reading about your fall on ice and problems during childhood was like reading about my own life.

    I hope you find relief, for me the medication (amitriptyline and pregabalin/lyrica) worked

  • One of the most useful posts I've seen on here. Thank you.

  • I am so glad for you that you have found answers and are getting relief. Have you also looked at the work of John Sarno, he covers L. Ani syndrome in there and the links to emotional abuse/stress/trauma. My pelvic floor physio found no internal or external points, but she did tell me that three pears a day and plenty of water was good to keep your bowels tip top :-)

  • I've never heard of John Sarno but I am going to research him. Thank you for this info! Every little bit helps.

  • thank you a lot. helpful and interesting post. Thank you for sharing it with us,, best wishes!

  • Hi there,I was reading your post and saw myself in so much of the information you have shared.Last April I started having terrible pain in the perineum. This led to terrible pain in the vaginal area.I felt as though I was being stung by several wasps at once.I had that same feeling of a foreign object in the vagina.I had terrible constipation and very bad pain after a bowel movement especially in the anal and rectal area.I too simply passed out as I could not cope with the severity of the pain and ended up in emerge several times.The doctors were simply stumped.I was in so much pain 24/7 and my poor family did not know what to do.My sister started searching online as a last resort.I ended up finding an article on Peudendal neuralgia which described me to a tee.We ended up driving to the states where my diagnosis was confirmed.As you are doing,I started physio once a week which is very helpful.I wish I could afford my own physio to work with me daily.My vaginal muscles are super tight so we also work on finding knots and trigger points.I am on Lyrica which helps wirh the neuropathic pain but oh dear the weight gain!!I wear a fentanyl patch to help control my pain and take noritriptyline at night which helps with pain and sleep.I also use a topical cream/gel made up of lydocaine and gabapentin which helps numb the vaginal area.Swimming is the best exercise for peudendal neuralgial so I am anxious for summer.It has been a very long journey but I take one day at a time.Your symptoms sound so much like pn.It might be worth looking into and help you get a firm diagnosis.Oh dear I just realized I could send my message to your personal email.If you would like to chat further please let me know on this post and I would be happy to email the next time.Blessings to you,jennyrobin

  • Jennyrobin I would love to talk more. Please e-mail me. Look forward to hearing from you!

  • I would love to talk to you both. I have the diagnosis of Pudendal Neuralgia, Trigger Points vaginally, Levator Ani Syndrome, IC, Vulvodynia the list goes on. How do we send a personal message with email address in it? Thank you. I have been with this for 9 years. Went to ER many many times took years before dr's diagnosed it. As if the other illnesses aren't bad enough this is the worst. I work full time but wish I could quit just to get better then to go back. I am 64 and also facing divorce. It's a mess.

  • Thankyou for information sounds really positive,would like to talk sometime.Which country are you in? Tracie.

  • Thank you for taking the time to share with all of us. You never can tell who you may have helped!!

  • I was just diagnosed with this. Oh my God, its so painful! 4 days aftery surgery to remove an ovary. Its gotten better but its still there. I'm hoping it wil.go away. The colorectal doctor gave me muscle relaxers as well as linzess. I remember feeling this pain when I was younger on several occassions but it alwaus went away. I'm praying it goes away. Its in the upper rectum and I am also constipated. I hope it goes away. I also felt it while I was working out one day so I can't really blame it on surgery. I wld love input from anybody.I also have I.C.