Hi, I have hypertonic pelvic floor muscles. I’ve recently noticed that my pelvic floor muscles seem to mainly start to hurt after I’ve urinated though.
I don’t have IC, as it’s not painful to go and no burning when I urinate and no urine frequency or bladder infection.
I just wondered if anyone else had these symptoms after going to the toilet. The pain usually comes on within about 5 minutes after going.
Does anyone else have this happening to them? It would be great to know what this means and why?
Thanks
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JoJo012
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I have had chronic pelvic pain for many years now and I find that urination often triggers the pain, particularly during the night. I had extensive scar tissue adhesions throughout my pelvis and which were thought to be the cause of the pain. My consultant thought that I may also have endometriosis that may be affecting the bladder, thus causing the pain after urination. However, following very recent surgery to remove the scar tissue adhesions, no endometriosis was found in the bladder and the scar tissue adhesions were all connected to the bowel. So I have no idea what causes this urination issue. I’ve seen a urologist who could find no bladder pathology.
Post surgery I am still having these problems, but it’s only been 2 weeks since the surgery so I’m trying to be patient and optimistic that I will see improvement.
I’ve just had a cystoscope and hysteroscopy where I had biopsies taken which were all negative. I’ve also had an internal ultrasound done but that was all clear.
I did wander about Endometriosis but I don’t really have bad pelvic pain, it’s just my pelvic floor muscle chronic pain and some soreness around my vagina opening sometimes. I’m under Professor Khullar at St Mary’s hospital, who’s a Urogynaecologist. He diagnosed me with hypertonic pelvic floor spasms.
How did you manage to get your adhesions diagnosed and do you know what caused them?
I had an ovarian cyst and then torsion that was discovered via ultrasound and when the gynae went in to fix them they discovered that I had dense adhesions which made the surgery difficult. Then once my pain didn’t resolve, despite removal of an ovary and Fallopian tube, I saw various specialities who came to the conclusion that the adhesions were the likely cause of my pain. whilst I was seeing different consultants I was also referred to physio to look into pelvic floor issues. My GP was fantastic and said the best way to do it not was to go through an incontinence service. Like you they found that I have an incredibly tight pelvic floor and I was given exercises to do to relax it.
I saw several surgeons who basically refused to do any surgery to reduced adhesions due to various risks, but I persisted and explained I simply couldn’t cope with the pain, so I was referred to a gynae who specialises in surgery techniques, and it was him who suspected endometriosis. Since I was about 17 doctors had suspected it, but had never found any during explorative laparoscopic surgeries.
I wouldn’t rule out endometriosis as patches can attach to any parts of the pelvis, including bladder, bowel and even further up the abdomen.
What treatment are you having for your pelvic floor issues? Have you found it useful? I’ve been really bad and not continued to practice the exercises I was given as I wasn’t seeing any improvement.
I’m having regular physio therapy but paying privately, as found the NHS ones to be rubbish.
I’m also under Professor Khullar at St Mary’s hospital where he diagnosed me with hypertonic pelvic floor muscles straight away, as he’s an expert in this field. He gave me Botox injections into my pelvic floor muscles but not convinced that did much for me to be honest.
I’m do my physio stretches 2-3 times a day and internal stretching every other day. It has certainly improved but I do still get pain and a lot of set backs all the time.
I’m going to see a different Physio next week who cured a friend of mine who had pelvic pain, so we’ll see.
Not sure I have Endometriosis, as don’t have any major pelvic pain, it’s just pelvic floor pain really. Also a bit off for this to start up at the age of 49 I would have thought!?
Was considering a laparoscopy but my Pelvic Floor Physio team are dead against it and think it might make my pain worse. Not sure what’s best now to be honest as next steps?
By the way, where exactly do you feel your pain, if you don’t mind me asking? Is it just in your pelvic floor muscles mainly or other places as well in your pelvic area?
I also have tight an pelvic floor dysfunction...mine is rectal but pain comes on within 5 min of bowel movement and I have it fairly well controlled by having a pelvic floor physical therapist once a week where she does mobilization and trigger point relaxation an I also have valium suppositories that were compounded for me...plus I have oral muscle relaxers if I need them and my pain doc put me on gabapentin to see if that calms the nerves down but I will try that soon....I am also following the book a headache in the pelvis on how to truly relax the pelvic floor....some of that may help along with the breathing ,stretching and meditation.....I am here if you need support because I did have it in urinary tract 10 years ago and vesicare helped a lot to relax bladder
Thanks. I am actually trying all the same things you are but still have pain unfortunately. The only thing I haven’t tried is the Valium suppositories, as they don’t do them here in the UK. I’m not on Gabapentin or any pain drugs either, as don’t really want to go down that route. I just take 2mg Diazepam tablets nightly as I need it.
I have no problems with relaxing my bladder and can go to the toilet normally and easily. It just hurts I’ve noticed in my pelvic floor muscles after I’ve been. Not sure if that’s the same thing you had?
Yes I had urinary tract spasms when I had the pfd before ..it was a horrible feeling...I don't know which one is worse....all pfd is horrid....I am doing the pelvic drop relaxation all day long and I wear a runner band on my wrist to remind myself to relax those muscle and I think after months of retraining it should help...I also sit in a heating pad at home and that feels better ....anything to help relax those muscles and keep reading the nerves down there ...but I consider it's taking years to get like this so it may take a long time to undo it
Oh I see. My spasms/pain isn’t coming from my bladder or urinary tract area, it’s in my actual pelvic floor muscles inside my vagina and that’s where I actually get the pain after I urinate.
JoJo I have the same condition as you. Throughout the last few years, I was misdiagnosed - first as Vulvodynia. I had surgery for a bladder prolapse and the pain did stop for 2 months. Then I was diagnosed with I.C. , however changing diet did not help and I did not urinate frequently. Finally I saw a urogynacologist who said that my pelvic floor muscle was going into spasms and the bladder/urine was somehow setting it off. It was agonizing - I dreaded going pee because I knew what was going to happen. The pain in my vagina was intense - sometimes lasting for 45 minutes! Was put on various medications (in addition to my gabapentin) that I had to stop because of side effects (too bad - Lyrica really worked...). So I am still on Gabapentin - up to 2300 mg/day but the urogyn put me on muscle relaxants - 3 times a day. Also a compound of Diclofenac/Gabapentin/Amitriptyline that I rub on my lower stomach twice a day. This combination seems to be working! It's an incredible feeling to go pee and not have it hurt! I hope you find something that works for you, my dear.
What kind of doctor do you go to to get help for this? Should I just go through my gynecologist or should I be referred to a urologist? I have only done pelvic floor therapy for the past 4 months and it has helped some but not with the pain after urination. I just feel like there is so much more I could be doing to get relief but noone has really told me about other options like the ones you mentioned. Does the muscle relaxer make you feel groggy? Do you take it during the day?
I take the muscle relaxant 3 times a day and yes it does make me a little groggy, but I am still able to go to work. I would trade the horrific pain I had for a little grogginess any day! In Edmonton, I go to the Lois Hole Hospital for Women. It is the urogynacologist there who is truly helping me...
I have an incredible update. My urogynacologist prescribed Intrarosa. They are vaginal inserts (comes with applicators) that you insert each morning. It has completely eliminated the pain!
What kind of pain do you get after urinating? I have pain after urination but it feels like a burning sensation and kind of almost like an achiness in my pelvis afterward. I do not have ic either but pain does get worse with urination and with my menstrual cycle.
Hi I know the post was a while ago but I wondered if you were any further forward. I have the same sensation. As soon as I wake up I feel a tightness and heat, like a mild period cramp or start of period. It feels like it’s my uterus. After passing urine it is more pronounced. It is more noticeable when lying down. It happens daily since about February (2020).
Hi, I’m actually almost ok now. Mostly pain free for the past few weeks and if I do get any pain it doesn’t really hurt now more than a 3 out of 10 tops. I did get woken up the last 2 nights with some cramping and tightness sensation in my pelvic floor muscles but it went away each time within about 10-15 minutes. This could have been though cause I’ve not been walking lots or moving around as much as I usually do as I’ve now broken my foot 🙄 Or could be fact that I’ve been trialling eating shellfish again now the last couple of days, which has caused me issues inflammation wise previously. We’ll see. I’m also on antibiotics at the moment as my finger has become infected from a cat bite/scratch, so maybe that’s flared things up again, who knows? Very difficult to tell when there’s so many different things going on.
I put my recovery at the moment down to doing the DCT program. My Physiotherapist and me feel that I’ve made the most gains whilst doing this.
I have the same thing. Pain after urination. Not during and no pain when my bladder is full. Just a burning and a achiness after. Comes on within a few minutes. Sometimes lasts for 10 minutes after sometimes hours no rhyme or reason. My pt says she thinks it is the muscles spasming and may be brought on by the voiding of urine.
I’m seeing a new Physio now who has diagnosed it as nerve pain. Basically he says it’s from when I’m relaxing my pelvic floor to go it’s triggering nerves to respond.
So I’m trying a different angle now to try and treat this. We’ll see.
Meant to say, I’m happy to chat with you more privately if you want to exchange numbers. That way we can compare symptoms properly to see if we’ve both got the same thing I’ve just been told they think I have perhaps.
Only a theory from someone who has suffered for 30 years undiagnosed with front end and now affecting rectum so just heard of Pudendal Nerve and diagnosed now with hypertonic pelvic floor.
I think basically, if your pelvic floor is too tight and hence dysfunctional, the muscles can't relax and lower when you pass water sending everything in spasm afterwards and the nerves send confused signal to brain. Only my theory.
Thanks for your reply. Yes I looked into that and I’ve been told I definitely don’t have that, as I don’t meet the criteria. I can sit down for quite long periods of time without a problem.
My Medical Team say that yes it is nerve pain related (probably due to tight pelvic floor muscles as you say) but just other nerves that are firing off each time that are shooting of the pudendal nerve branch I lower my pelvic floor to urinate. Apparently it’s actually very rare to have PNE and it is over diagnosed a lot. They said there’s lots of other nerves in the surrounding area that can get irritated. I agree though that my nerve signals are probably getting mixed up. I’m about to see a Uro-Neurologist next week to investigate also, so we’ll see what he thinks as well.
I know I definitely don’t have any entrapment though, as my nerve pain comes and goes. Yesterday I had no pain the whole day. Just only of numbness/pins and needles feeling in Piri area.
I also don’t have any rectal nerve pain and can go to the toilet fine.
Any updates? Just started following you with pelvic pain. I have exactly what you have described! I'm on myrbetriq and seeing a pelvic floor physical therapist..I have pain after I urinated for about 5 to 10 minutes..most noticeable after my last void before bed. Thank you for any response
Hi Chessiegirl, getting much better now thanks. Pain is down to an average of 3 out of 10 most days and have quite a few pain free times now. I had another cystoscopy done and it showed some bleeding/inflammation in my urethra and a biopsy was done that showed an extremely high Mast Cell reading. I am now on regular antihistamine tablets (Loratadine) and we’re also trialling HRT on me, as this kind of all started around me becoming peri-menopausal, so my Consultant I’m under said to see if this helps. I have to say I can’t see much improvement yet from being on the HRT and have been on it now for 3 months, so should have kicked in by now but we’ll see. Will give it another 3 months and if no significant improvement I will come off it. My Consultant says I have something called Mast Cell Activation Syndrome that is affecting my bladder and causing inflammation that then causes my pelvic floor muscles to tighten in response, which then causes me pain.
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