Do anyone have an overactive pelvic floor muscle? Advice would be great.
Posted , 4 users are following.
Hi my name is Sophie and I wonder if anyone can help. I've been having UTI type symptoms now for nearly 8 weeks and I am close to just losing my mind with it all. My symptoms are mild sensation of urge to urinate, pain in uretha,back ache,cramps that are in my hips and legs and bum cheeks. If i walk up the stairs I feel like my whole lower body have just done a work out.
My gp has ruled out bacterial infection and blood tests are fine but now I'm getting vaginal swabs tomorrow and then if that's all clean it's referral to urologist. She doesn't suspect IC due to me having absolutely no bladder problems in my last history. I also did a 7 day diet of bread and water and my symptoms didn't change So I gave up and went back to normal food and my symtoms disappeared for a week so i know that acid foods aren't a problem ?! So i am swaying to thinking it's tightness of the pelvic floor and I have had a large amount of stress the passed year so i cant help but think it's neuropathic. Sorry for the rant but i hope some one can help me. Thank you
0 likes, 13 replies
stephani60379 sophs50522
Edited
Hi Sophie,
I have been having severe issues with pain in my vaginal area it was burning to have sex and if I had been active, when I would go to the bathroom, that would burn as well. It got so bad that I was having a hard time walking or really doing anything active. I found out after having 1 surgery, 1 MRI and 12 doctor consultations (all tests coming back normal) finally I was diagnosed with something called Vulvadynia/ vulvavestibulitis with Lichen Sclerosis (this made all of the above itch on top of the pain so I'd scratch then it would burn more) the doctor who diagnosed this was spot on but didn't know how to fix it. She prescribed me an antidepressant that is used for migraines as well as pain management, it is Noretrypteline, I found 4 pills was the magic number to help me ease the pain.
However, these pills never got rid of it completely so I kept searching and finally found Dr. Denise Sweeney who was a lifesaver! She finally knew how to fix my issues. She gave me steroid shots until the muscles calmed down, now she is using the Mona Lisa laser. I had my second treatment today and I've been so much better already.
So all of this relates back to you as all of my issues are caused by the pelvic floor being overactive. I was referred to a pelvic floor physical therapists where I am doing diaphragm breathing, bridge, pelvic tilts, clamshells, etc. These are all exercises to strengthen the pelvic floor muscles which will eventually release the pain. My therapist, Amy, said when you breath in it contracts and if you don't properly release it keeps contracting until you are in pain, we are working on training it to release and strengthen which is hard because there are so many muscles you don't know are down there and sometimes you have a phantom limb like sensation (your body is so used to being in pain it still sends distress signals as if the pain is there even if it isn't) The breathing technique is critical though so be mindful of that and your posture.
If you have any questions feel free to reach out, and I truly hope this helps give you some insight as to what may be wrong. I have been suffering with this for almost 4 years and don't wish it on anyone so hopefully this will help other women. Dr Sweeney does classes on this (we are located in Roseville, CA) so tell your doctor to investigate. She was a blessing to come into my life and I hope others find the relief she provided me.
Best of luck!!
sophs50522 stephani60379
Posted
Hey Stephani thank you so much for your response, I'm swaying to thinking that's more my problem however I don't have any pain around my vaginal opening but more my uretha ? It don't hurt whilst urinating I just feel major discomfort after I've urinated which I can only assume it's down to my pelvic floor muscles being used at that time? I go to bed and wake up feeling absolutely normal until I start the urinating process all over again.
Because of my major health anxiety I can only imagine it's causing my muscles to stiffen because I've got all over muscle aches. It's so draining though and I really hope I can get to the bottom of this.
I'm based in the UK so i unfortunately I can't visit the specialist you have recommended
did you have discomfort like a uti feeling at all ?As maybe mine could turn into vulvadynia if pelvic floor is my issue. Thank you again for replying. Didn't think I'd receive any responses x
klc789101112 sophs50522
Edited
You are the first person who has exactly the same symptoms as me. I know this post is old but if you got anywhere with the pain please let me know. I am fine in the morning but once I urinate I get the pain after I urinate and then for the rest of the day just in the urethra it is so horrible. I am doing pelvic floor therapy and the therapist says it is all muscle issues but it is hard to believe. Please let me know.
sophs50522 klc789101112
Posted
hey. I can't believe that post was two years ago.
sorry to hear you are suffering too.
Sadly the pain hasn't gone away. sure it's coming up to 3 years now.
I've basically got a biolfim infection. I've seen a urologist in London who deals with chronic embedded infections within the bladder. He looked at my urine sample through a microscope and could see i had loads of pus cells which indicated an infection. treatment is long term antibiotics and although it helps it gave me horrific thrush which seemed so much worse than the bladder problem it's self. now I'm sure this was caused by low immune system from my stress etc.
anyway I packed it in after 4 months and thought id try again another time as I wasn't mentally prepared for my gut being destroyed by the antibiotics lol
to he honest I'm used to it now and it's become the norm
I also had a cystoscopy too and he said my walls looked fine but I had sediment in my urine which was likely the cause of my symptoms ( sediment is basically my bladder wall shedding from my chronic infection )
if your struggling with the pain ask your gp for amitriptyline. it basically blocks out signals to the brain from the nerves in the bladder. it will make you feel almost normal again but it do come with some dizzy side affects!
Malteroo2194 sophs50522
Posted
Hey, I am also suffering from the same symptoms youve described, its a first to finally find somebody who feels the same way I do! Especially the symptoms only starting after the first wee. I have tried everything from antibiotics to bladder control tablets nothing seems to work. Just started on a course of Amitryptiline.
Did you ever look into the pelvic floor dysfuntion? as thats the route im going down now and wondered if it helped you?
And do you still constantly feel the urge to wee even 2 years later or has it got better?
Sorry for the 21 questions its just the first time I've found a forum with the same symptoms as me!! I feel like I'm slowly going insane over here 😦
sophs50522 Malteroo2194
Posted
hey, sorry to hear you are suffering too. it's so frustrating isn't it?!! I did look into pelvic floor dysfunction but didn't see anyone about it. I booked an appointment with the uti specialist in London who said I had a large amount of pus cells in my urine which indicates I have got an infection. ( biofilm that lives deep in the bladder walls and is hard to get to ) but treatment is long term antibiotics and it destroyed my gut flora. I am now sensitive to candida, I can't even use perfume products now because of it and found that made me worse than the infection itself so I took a break and thought I'd go down natural antibiotic remedies when I am ready. My cystoscopy results showed my walls were healthy but I had loads of sediment in my urine which is basically bladder wall skin and its my bladder trying to shed away the infection which can't always be seen on the camera.
I don't think the feeling goes away but you do learn to cope with it better. It becomes the norm if that makes sense ? you will get a good few days and then when the bad days return you sometimes forget how bad they were!
They are called flares, they can last from anywhere from a few days to a few months!
I think a pelvic floor specialist will help in all cases regardless of what is going on so it's worth a go.
oh don't worry about the questions. I was like you at the start lol I spent hours and hours researching and I cried for weeks 😦
I always wanted to try the amitriptyline but wanted to see if I could go down other avenues first but I have heard amazing things about it and people have gone into remission on it.
Let me know how you get on with it!
stephani60379 sophs50522
Posted
Hi Sophie,
When I first was trying to figure it out, no one ever responded to my messages so I've decided if I can help even just a few people, it could be life changing for them and I'm all for it so I've joined a few chats hoping I can give insight.
It may be something different but you are very right, it could turn into Vulvadynia if not treated correctly. For me it burned severely and I thought it was a UTI or actually went to get tested for STD'S thought maybe I was cheated on and he brought something back, but none of those were it. You can inform your doctor of their work so they can familiarize themselves and find someone close to you that may have attended a seminar on these issues. While you find a doctor that may know, start on the pelvic floor exercises, look them up online, and make sure you are in perfect form. The exercises will help but it'll take time. I have a ton of family in the UK, I was out there visiting my uncle's and cousins in August, I love it out there but not sure I'd survive the winter haha good luck and I hope this at least gives you a place to look or something to ask for!
sophs50522 stephani60379
Posted
Thank you I really do appreciate you replying. I agree it's always nice to have atleast some response. So thank you for that.
I dont know whether mine is neuropathic or what, I'm convinced I've got fibromyalgia or something like that, that is causing my symptoms.
I guess I'm on a long road to diagnosis
haha I agree it's bit cold over here. But i dont mind it, love wrapping up warm. are you based in california? Ive always wanted to go there. It's on my to do list, need my 2 little girls to grow up first though. They are 4 and 1, as you can imagine it's a bit hard having to deal with my problems and 2 young children. So draining. But again thanks for your help. It's so nice to know there are people out there I can relate to who are going through the same problem. I really hope your symptoms improve for you as time goes on! Xx
stephani60379 sophs50522
Posted
I don't know much about fibromyalgia, have you asked about it yet? It is so hard to know something is wrong with you but have no idea what it is or how to fix it. I am thinking of creating a special website just for women with vulvar pain with articles I've found from respected authors and treatments I've found, also a chat room so you can ask questions like this but the whole site will be dedicated to only our types of issues and ways to fix it. I am going to talk to my doctors and ask for good places to start with it.
I am in California, it's beautiful here, fantastic weather most of the time and if it isn't, you are a short drive away from it. I am in Northern California, so there's any type of weather near by. Where are you located? I have family in Airdrie, Scotland. You poor thing, I don't know how you are managing to take care of 2 little ones while dealing with this, you are a strong woman. I will see if I am able to find anything that may help you out.
sophs50522 stephani60379
Posted
Hey Steph, i did mention fibro but again that is also hard to diagnose, i guess we will try anything won't we go find a cure. I've already got about 10 vitamins in my basket with Holland and Barrett lol it's so lovely to have network media this day and age. It really do help being able to speak to other people who unfortunately also suffer similar problems.
Sounds really lovely, i would love to head over. I used to watch 90210 on tv and I know it's filmed in L.A. etc. Always looked beautiful.
Now I know why you said it was cold .. Scotland is absolutely freezing!! Lol beautiful place though. I am from Wales.
I try and be strong, I am struggling to stay head strung to be honest. Im only 28 and i feel like i am far to young to be dealing with this
.
Thank you. Your a great help xx
stephani60379 sophs50522
Posted
I have been spending money like it's going out of style trying to find out what's wrong with me, so far I am about $5,000 in and still have at least another $800-1,000 to go but money doesn't mean as much when you are too miserable to do anything so it's worth it in the long run (even if it is super tight now). It's so hard to spend money like that and not know for sure that it is going to work, but at least now you can connect and see what others say if they have faced similar issues. Wish my issues were similar to yours so you'd have an answer. That's so funny, I am 28 as well and constantly saying that I'm way too young to be having all of these issues, I'm not sure what the problem is but something I've been thinking is maybe it is partially hereditary? I've seen most of the women I've talked to are either from the UK or close descendants of someone from there. Obviously not all, but maybe there is something to that? I never made it to Wales on my last trip out but want to next time, my mom's dad and wife after my grandma lived in Wales but he died a few months before my trip out there. California is beautiful, you definitely have to make it out here one of these days when you are feeling better, there is so much to do. I got round trip flights from San Francisco to London for $550, my friend just booked a flight out there and will return from Paris but the flight each way was $277. Not bad at all!! You should look into it one of these days.
sophs50522 stephani60379
Posted
Oh wow that's alot of money, I am so grateful that we have NHS. If i had to pay medical bills and for medication I would be so poor. Atleast you don't have any waiting lists I suppose is a bonus.
I could be waiting for 6 months to see a urologist.
But your right.. feeling healthy is worth any amount of money. I really hope you get it sorted soon so you can start enjoying spending your money on better things!
Are you 28 too ?! Oh that's made me feel alot better that I'm not alone with suffering so young. Everyone I've spoken to recently have been in there 40s or 50s. I do think it could possibly be hereditary.
Do you have any children? I love my daughter's but i definitely wouldn't have had a second child if i knew I was going to be plagued with these problems lol I am looking forward to my 1 year old going to school and I feel awful for saying that but the stress of all this makes having a baby that little bit harder. Wales is okay.. It's not all sheep and fields like most people think it is haha. But much nicer places around the UK. London I find a bit hectic. Not my cup of tea.
That is really cheap! I want go for my 30th birthday. My parents will have the girls for me and my partner so i will really look into that. What time of year would you suggest is best for weather over there?
stephani60379 sophs50522
Posted
NHS does sound really helpful, sometimes I wish we had that but mostly I'm grateful we don't. When Obamacare took effect I couldn't get in to see a doctor for so long it was frustrating. I had an allergic reaction to the antibiotics prescribed to me (they thought it was the best first course of action for me to try because of how mine onset) the doctor couldn't see me for 8 weeks at the absolute earliest even with that type of reaction. Crazy! When you're in pain, waiting sucks so I'm pretty happy I can now get in fairly easy.
Most women suffering from it are older so it makes it really difficult to relate because of menopause and the changes in hormones that we aren't facing yet. It's so funny that we happen to be the exact same age. Well, almost. I'll be 29 in March. As for your 30th birthday trip out here, spring and fall are the best times to be out here. September October is a great time because it's still warm but not super hot any more. Tahoe is fantastic in July though so really depends on what you want to do or where to go. April or May are great times as well.
I don't have any kids thankfully, I don't know how I would make it through having little ones running around (that's without my pain! Haha) I totally understand where you are coming from though, having a little one around is difficult by itself so it'll be nice for you to have a break and focus on getting better while she is at school.
I loved London! Visiting at least. I'm not a fan of big city living but I do love to visit for a few days. I could imagine once the novelty of it wore off that it wouldn't be fun any more. LA and San Francisco are fantastic places to visit if you've never but I dread going there now. Wales seems like it would be beautiful though.