Pelvic floor in constant spasm

I am new to the forum. I had a vaginal hysterectomy Feb of this year, 2015 for HPV high risk only. No pain or problems. However after this surg I have had constant pelvic pain and spasms. All tests have come back negative such as cystos, sonos, etc. I was diagnosed with pelvic floor dysfunction. What a nightmare. I have been seeing a pelvic floor specialist and upon her exam she says my muscles "down there" stopped functioning properly and we need to reverse this. Anybody have a similiar situation happen to them or how long can this therapy go on till other options unless there are none? She releases these muscles but doesnt last long. She tells me to be patient. This has totally changed my life. My job entails being on my feet all day also. I just dont understand how this surgery could have done this to me. 3 sessions so far with deep massage. I am scared this is a life sentence. Any feedback most appreciated.

42 Replies

  • Hi,

    I suffer from the same condition. It developed after hemroidectomy surgery which had the complications of an anal abscess and fistula. Weird enough the pain took about 6 months to appear after everything had all healed. Scar tissue developing perhaps?

    What I have found is the pelvic floor physiotherapy has reduced my painful trigger points but it takes a long time and a lot of treatments. If you haven't already been given a pelvic floor wand you could ask your physiotherapist about this so you can release the muscles yourself.

    I've had all the usual tests as well including MRIs, colonoscopies, urodynamic studies, bone scan, urine tests, ultrasounds goes on and on.

  • Hi, I'm really sorry to hear you are both suffering from this too. It's just awful and tends to rule your life, doesn't it. I nearly always have anal pain itself or a strong pain just to the right of the anus. Sometimes it spreads to the vulva. Pudendal nerve has been mentioned, but I don't think that's it. And if it is, what is setting it off? I'm constantly bloated and take Lepicol to help transit. I have been to a physio, but no luck really. Can I ask where in the country you are i.e. how you found a physio who DOESN'T want to give you pelvic floor strengthening exercises. I did think about the wand but wouldn't know to use it. The medical profession, unfortunately, does not have a clue and I know that going to rectal surgeons, etc. is not what I need or want, because I have known too many who have gone this route, had prolapse surgery and eneded up with additional pain problems. Any idease welcome?

  • I am actually based in south east Queensland. The physio I see is actually listed on the pudendal hope website. She is based in Nambour and travels to my town once a month. Her name is Robin Kerr. If you google her she has her own website.

    The physio so far has managed to reduce some of the pain in my trigger points from say an 8/10 on palpitation to a 3-4/10. I think my pain has become centralized in my nervous system due to the severeness of it. So even after the trigger points have been released it might take months for the full benefits to kick in as my nervous system recovers from being in so much pain.

    I've seen a heap of rectal surgeons myself. I even tried a procedure called an LIS for an anal fissure but it didn't seem to stop the spasms.

    The pudendal nerve runs through the pelvic floor so if the muscles are in spasm it can put pressure on the nerve causing the burning. Scar tissue can effect the nerve as well.

  • Thank you for your understanding, and yes it not only rules my life but the lives of all who love me. I don't have any thing I can offer you at this time, but my solem promise is that should I find any answers I will be back to share with all of you lovely fellow sufferers. I cannot even begin to list all that I have tried, but I will not quit trying until I take my last breath. I want my life back.

  • Thank you for your response. My muscles are so sore and burn after therapy. I do feel I am improving therapist told me today I am not hypertonic anymore which will allow my muscles to start behaving normally. When you are in pain for so long your brain still is in pain mode she says. How long did you do PT and did you hurt after sessions?

  • I have found PT does cause an increase in pain initially. In fact the first few times I vowed to never get it done again such was the pain of the flare ups which lasted 3-4 days.

    I've tried 3 different physiotherapists and it's only the most recent one that's made some progress with me. Actually one of my painful trigger points has been completely released. When I perform the home treatment using the therawand it's just not as sore anymore.

    I've been doing PT every 2-3 weeks for about 3 months plus performing a home treatment using the wand twice weekly.

    What I also found is despite my muscles becoming relaxed and less sensitive on palpitation I still have a surrounding dull pelvic ache. I believe this is something to do with being in pain so long. Perhaps in time now that the trigger points have been released the surrounding pelvic pain will decrease hopefully.

  • I also have tight bladder fascia which is referred from tight PF muscles. Did you have this? My therapist has been massaging this and hopefully it will release soon. I do cobra stretching . i feel relief doing my stretches but then it spasms more after. This is so frustrating.

  • I burn after every massage treatment. Is that good ? 6 weeks of massage so far. Pain still 24/7

  • I have had the same problem, it started three days after surgery to remove fibroids. It is now four years later and the pain is constant and irretractable. I am unable to sit ever and cannot lay in a bed. I sleep in a zero gravity chair that lifts my pelvis. I have been to about 25 specialists. I haven't been able to work with the pelvic floor specialists because the pain trigger is so intense and dibilitating. I do suggest you work with the pelvic floor therapists if you are able, for me it was two years after surgery that pelvic floor dysfuntion was even mentioned and now it is suggested it is to late. I walked into surgery with a smile and a hope to begin a family, and am now disabled. This doesn't have to be your story. I am not sure how, but I am going to get help, and when I do I will let the women of the world know.

  • Sounds like you've had a really tough run. I think the key is finding the right pelvic floor physiotherapist as well. So far I have tried 3, and it's only the third one that's making some progress and was able to tell me which muscles I exactly have in spasm. For me it is the obturator internus and some puborectalis.

    When the PT palpitates my pelvic floor I actually have a sharp pain shoot down the back of my leg and into the calve muscle like its some nerve behind the rectum.

    Have you tried any pain medications?

  • Sadly pelvic floor psychotherapists are unable to work with me. They all say they are so sorry, but my pelvic floor is in such a state of spasm they are unable to do their magic.

  • I am just recovering from a pulsed RF to my pudendal nerve. That was 4 weeks ago and it's still flared up. I regret having this procedure if it doesn't go back to how it was soon!

    Maybe you could try botox next if you haven't already? That's what I am thinking about as my next step.

  • Monique, mine is that bad too. I am also disabled, and there are very few positions I'm able to be in and none for that long. One thing that does help me, though, is methadone. It has a bad reputation among uneducated doctors, but the educated pain management doctor knows that it's a good pain reliever with few side effects. Because it used to be primarily prescribed for opiate addicts, some people still think of it as a drug for "bad people," which is ridiculous. I take a small dose, and it cuts my pain by about 50% for 5 hours. When that happens, I'm able to sit just long enough to make it through a meal out (also bring a seat cushion). I am also able to sleep if I take it before bedtime.

    I'm also still trying different treatments, 4 years later. I still have botox injections and ganglion impar block to try. Have you tried either of those yet?

  • Glad you have found something that works medication wise. It seems that pelvic pain requires very strong medications for relief.

    I had to be referred to pain management to get anything that remotely worked. Currently I am taking lyrica twice daily.

    I do have oxycodone for flare ups, it's the only thing that takes the edge off it when it's really bad.

  • Oxycodone didnt do too much for me. It seemed like it mostly distracted me from the pain for an hour or two by making me feel high or loopy. Methadone is more for nerve pain. And it reduces the pain noticeably while not making me feel the least bit loopy. It worked very well for almost 4 years, but lately, although it definitely helps a ton, my nerve pain and burning has gotten so bad that I still feel horrible when I sit for a while. I started gabapentin a couple months ago but no relief from that yet. I may try Lyrica too.

  • There is only a few pain specialists around that prescribe methadone where I live. I believe it's heavily restricted?

    I guess if it works well though, its always an option after exploring all other treatments.

    Lyrica definitely helps me more than gabapentin. I tried gabapentin about 2 years ago with little effect.

    I find distractions help with chronic pain as well. Keep yourself as busy as you can without causing major flare ups of course.

  • There is a something called Central Sensitization Syndrome. It is rather complex, but basically after a time on medications they work against you. It is worth reading about. I have been on Gabapentin for four years. About the time I think it doesn't help I quit and "Ow." I have also been on OxyContin, Percocet, Amatryptaline, Lyrica, Dilaudid, Nycenta, Suboxone, Flexeril, Norflex, Cesamet, Sativex, Tramadol, marijuana, anti-inflammatories, aspirin, to name some of many. Have I ever had complete pain relief, no! At times I am more comfortable than others, but then it attacks and nothing I take offers me even an iota of comfort. Currently I take the Gabapentin, and am trying an assortment of supplements and vitamins with LDN(low dose Naltrexone), in an attempt to deal with central sensitization syndrome. I am only four days in to it, and although, through what I have read, it has great promise, the jury is out. I have dedicated hundreds of hours into reading and research. If this should help me in anyway in eight weeks I will let you know. I hate hate hate drugs and I hate what they do to my brain.

  • Another thing you could try is Valium. I found it works better than the straight out pain medications. Especially when you have an "attack" and the spasms are really bad.

  • I have been on almost every medication. I have been on Suboxone but not Methadone. I have had many blocks but not Botox. Can you tell me if, in fact, you have a lot of brain fog on Metadone? How long you have taken it? And, what was it like to adjust to it in the beginning? I so want to keep my brain partially clear, as I don't have much else left. I too am so sorry for your pain. I do appreciate your answer.

  • I didn't notice any difference when starting methadone other than the pain suddenly having decreased an hour after taking it. I made sure to start with a very small dose like I do with all medicines at first. I took only 2.5mg per day, which is half of a very tiny pill. After a couple weeks, I started taking 2 doses per day. If you take too much you will feel dizzy or too numb or something. But the dose i take i dont notice any type of side effect and it's impossible for me to tell whether ive taken it if i didnt pay attention while i was taking it or keep an orderly pill box reminder thing. Everyone is different though. I have a high natural tolerance for pain meds.

  • Thank you. It is an option for me. I am trying LDN now and then it will be next. I hope you have much relief. Thank you so much for the follow up.

  • A hysterectomy has adverse side effects on the pelvic floor muscles, however you could have alignment issues as well. Seek a knowledgeable pelvic floor pt, ask for compounded suppositories to use vaginally that have Valium and bacolfen in them, also an oral muscle relaxer. Try yin yoga, no stressing exercises.

  • I was thinking about muscle relaxers, but all I was given was Diazepam. It doesn't do it. I have no idea at all what initially (2 years ago) started this horrendous pain in what I initially though was my cocccyx, anus or all of it. I THINK I have IBS as well. Hugely bloated and can't pass wind. I had an L4/L5 spinal fusion a year ago (after the initial pain) and that hurts like hell too. I am afraid of the heavy painkillers like pregablin because I need (and want ) to function mentally. Otherwise I would have to give up my job and then all I'd have is this awful pain. Are any of you in UK? Does anything work?

  • I will say that pregabapentin is helpful for me. I am never out of pain, but if I stop it I am in hysterical pain. I take the max. 3600mg. daily. When I began at a small dose I hated the way it made me feel, but I was desperate.

  • I've learned in my 24 year journey of pelvic pain that there are many things that can be involved and any kind of trauma including surgery can cause spasm of the pelvic muscles. I had this problem. horrible pain for many years and did PT multiple times for years. it never helped. The one thing that has finally worked is botox injections to relax the muscles and start the healing. Now my PT can help me learn how to retain this relaxed state and retrain my brain and my muscles. It's working so far and I can hardly believe it. Something finally helping? It's like a miracle. I'm not saying this is you but hoping my lengthy experience can help you. If you believe there is spasm or hypertonis, consider botox. Do you have trouble with urination? Starting or Keeping a steady stream? Trouble emptying the bladder?

  • I have never had trouble urinating since my surgery, nor trouble emptying. Normal bowel movements also. Just PF spasms after each. Maybe this is why injections havent been suggested yet. My progress is very slow but I do feel somewhat better. PT once a week, my therapist doesnt want to do more in fear of the muscles being too overworked and degress. Pelvic floor still hypertonic but slowly improving. The fascia around my bladder is so tight that she cant even work my bladder yet until that tension is released. I feel like I am doing well in the evenings getting into a relaxing mind state, breathing exercises, calming music, but spasms stick with me. My demanding job doesnt help either. Intervening with an injection at this point scares me because I am scared it could make things worse. I was painfree before surg and came out this way. I have an appt with a different urogyn at the end of the month to get her take on things. A female doc for a change. :) How do you train your brain?? My PT said my muscles have to relax first before we work on that. My surg was in Feb so still early but pain is pain especially when there is no break from it. I am so glad to hear you are doing so well after years of pain. Where do they inject the botox? Painful? Thanks for sharing your experience.

  • The botox is injected around the coccyx and other muscles that the doc finds tight or spasmed. She does an exam to determine the best locations. There is an option to do it in office but it's extremely painful so she can only do 50cc if that. So you can opt (which I did) to go under and get the full 100cc. She said many people when they go under their pelvic floor relaxes..mine did not. Obvious involuntary tension. But anesthesia....No pain, nice nap.....and relief came quickly...within days. Pain free sex with my husband for the first time in our 23 years! That's Worth

    It all. I had pudendal nerve release surgery years ago and had minimal relief on my daily pain but it never touched the sexual pain. Botox was the only thing. New life for me! I hope you find the doctor and the treatment that gets you healed.

  • I have heard of the term trigger point injection. Is this the same as botox injection?

  • No. Research trigger point injections because they could be doing something totally different than when I did them years ago. My pelvic pain specialist injected, I believe lidocaine to reduce pain, and maybe a steroid to reduce inflammation. I can't totally remember, but many believe just the poke of the needle is good for the trigger point because it increases blood flow to the area to facilitate healing, the idea behind acupuncture. This is why I also swear by my soft tissue specialist. He also knows how to release them manually, no needles, just hands.

    You need to look up botox. It is actually a toxin. Many people have negative feelings about it. But, they have found it extremely helpful in reduction of pain since they started trying it for migraines I believe. My sister had it done for TMJ a few years ago, for total head and jaw pain... and is healed after only one time. It really does relax the stressed muscles as I've experienced. Research it. It's also hard to find someone who does it, though much easier now than when I started looking years ago. If over tensed hypertonis pelvic muscles is causing you a lot of pain is worth a try to improve quality of life.

    What surgery was it that you had? And how long have you been dealing work all this?

  • My surgery was the end of Feb, hysterectomy. I had no pain prior to surgery. High risk hpv pap smears continued to look dismal so hyster suggested. I have been doing therapy since June. Everyday I feel as if someone has a tight grip on my pelvic floor muscles which in turn causes pf muscle spasms. I have had intercouse recently for the first time since surgery with no pain during but after, oh my... I felt like someone kicked me in the crotch with all of their might. I feel like mine is a horrible discomfort that I live with everyday not necessarily a doubled over pain feeling. I sleep with a heating pad every night. Maybe I am in the early stages and not being patient. My physio is confident that her and I can get thru this and I will be pain free. I leave after therapy and feel some relief but then a day later its back. So frustrating.

  • I'm so sorry. Pelvic surgeries often seem to cause pain in the pelvis. The muscles react to the trauma like other parts of the body if you get an injury. Tightening to protect the area. If the therapy is slow going and the pain is bad, botox could potentially get you there faster. It did for me. Now it feels like my muscles respond to the therapy. They're being retrained to relax and I can feel it happening.

  • Thanks for the info. Gives me hope that since you suffered so much for many years and are able to now heal and feel better I have a chance too. I will def keep botox in mind. Does botox inj have any side effects did your doc tell you about? Like would there be a possibility it would get worse?

  • It looks like I never replied to your last questions and I apologize. There are usually no side effects of botox but occasionally someone might experience more of an urgency to go to the bathroom. I think with those muscles loosened it's harder to hold it in. I experienced a bit if this but not for very long. If you have the ability to be home mostly afterward for a few days just to be close to the bathroom it's not a bad idea, but this doesn't happen for everyone. In fact she said it has happened for only a couple of her patients. To me, any minor possible side effects were worth it get some relief.

  • Thank you so so much.

  • I am so sorry. My problem stemmed from surgery as well. How I walked in healthy and pain free to a 99% disability baffles me. I've posted some details from my journey after other posts if you want more details. At this point I can only say I understand your discouragement and hope hope hope we can find an answer.

  • I am about to have Botox injected into my pelvic floor after thousands of dollars of physical therapy. 

  • Hi 

    Suffering with the same and just thought I'd add some info 

    Seeing a physio is really good they do get function in when seen every week but I found when I stopped then the issue came back, I'm looking to see somone for Botox to stop the Spasam I find when I was working on my feet all day I also was worse exspecily if you throw your weight onto one hip so always even out how you stand and deep breathing through out the day actully helps.. It took me a month of physio before I got the release... The Thera wand also dose so much for the relaxing down there every morning and night is recommended I hope that your physio helps you out :)

  • Oh crushing dispam into lube helps before bed and putting internally but it comes back through the day I'm starting to think Botox may only be the only way for us

  • I too have seen a pelvic floor therapist and have been doing exercises for months. Seem to help a little. I have ibs too and my stool tends to get stuck and I manually evacuate so my therapist won't do trigger points or the wand. Have you tried the wand? I was thinking about that too. The levator is debilitating and I HATE it. I have tried everything. I have posted before so you can read everything I have tried. This is insane!!!!!! So tired of having butt pain every single day!!!!!!!! Be patient my ass! I have been patient for almost two years!!!! What else have you tried? I would love to talk to you some more. We are in this together!!!

  • Had Botox 3 weeks ago in the pelvic floor muscles. Haven't really had any relief of pudendal neuralgia yet. This sucks so bad!

  • I don't know if this thread is still active but I'd love to know if any of you have found relief? 8 yrs ago is when my nightmare started, and the fight in me is dwindling. People without any idea what chronic levator spasms, rectal, abdominal and coccyx pain, burning, etc feels like, (including feeling like you have a golf ball lodged in both openings), could not possibly understand this hell. At first when it started, I thought I was having endometriosis again, even after having a complete hysterectomy. That was when it still wasn't constant. The PP Specialist found and removed some old adhesions, but said it could no longer grow. Getting Botox once only made me lose control of my bladder once. I went to a PT about 6 times and she said the muscle would immediately go back in to spasm when she let go, and this was 6 yrs ago. If I were offered $1,000,000 or get rid of this hell, I wouldn't hesitate. This has made me a completely different person, and has affected my now 18 yr old daughter for life. Since she was 10, our whole life is dictated by my pain. I often think I should rip the bandaid off to be out of her life, because I am tired of her suffering because of it. People don't understand how you get so desperate to end the pain, that you think about the only one sure way to do it. I don't want to die, I just want to live, and this is not living. The only time I have any relief, is an hour (for less than an hour) after I take my pain pill, or if I'm laying down. Not many accounting jobs out there that would let me work laying down. I found a Dr who promised to get me off all pain pills within 6 months, by putting an implant in my back. We have to follow steps first, in order to eliminate less invasive procedures working, and gain approval. Has anyone had an implant, and can you say how much it's helped? As I told my pain doctor yesterday, and each time I see him, I'll take it until I can't, but that's all I can promise. I would give anything to be free of this. I can't give the last 8 yrs back to my girls, but I could start living again and be the funny, sarcastic smart ass that loves to make people laugh again. It's great to have found this board, too see I'm not alone in this, and to hear that there's hope.

  • Sorry to hear that. I've had this for a lil over 10 years now, they're are others that have had it longer. I also have CRPS and 15 other painful conditions...right now the CRPS is the killer. My son is 19 and has lost a mother also. As has my husband, I don't know why they stay?

    I've had 10 surgeries (no decompression), 3 spinal Stim cord trials, over 50 ESIs, and a full folder of MRI/mRNs. Every surgery has made me worse, the last injection a bilateral PN block hit my nerve on my worst side and a month later am still trying to recover. My PN pain has escalated higher than I ever believed possible, but the injection nicking/hitting the nerve could also have set off my CRPS.

    I had an ambulance driver laff and call me a liar when I tried to explain CRPS & PN. He then picked me up by my CRPS leg (big no no) and plop me on the gerney. I screamed and said that I informed him of my CRPS...was he crazy? That brought on a barrage of insults from him...I'm like every Mexican in Ca. make fake 911 calls at taxpayers expense, to shut up and quit talking about my sex disease (the PN), & if I really was hurt I couldn't be that angry. I said, "buddy you have no idea, 22 yrs old making min wage." Mind you, he thinks I'm on welfare or an Illegal immigrant, he shouted in my face, "lady I make 15$ an hour, more than you ever will". I just shut up-my husband travels the world, I have my Masters and was part way through my Phd when I got sick and I had a 4.00 g.p.a. Then to punish me he left me outside restrained to a gurney late at night by myself. He was to wheel me in behind the main driver while he did his paperwork, however he scolded me and said you can sit out here until you can cool off, and went inside.

    I share this story cuz this is how we're seen. Liars, drug seekers. You may find this interesting, a website for med students. Their most hated subject? The pelvis-too complicated. The comments are disgusting. One said, "who cares as long as you know where the vagina is". These are our dr's now😕. I posted the link on Pudendal Neuralgia Hope, it won't let me copy and paste, their server is down right now.

    I've heard of ketamine infusions, (want to try) I'm just too scared to be opened up again and the stats for success of decompression are dismal. My only problem with the ScS years ago was the placement (even after 3 tries)! Hopefully, it could work for you. I also have several problems with my back and need to have my MRIs. Best of luck. It is a miserable existence, but one day at a time we all can do it!

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