Hey everyone! I am new in this forum and wanted to say hi and maybe some of you can help me or give me advice on what I can do or where I can go to to find a solution to my pain. It all started 4 months ago overnight. I woke up and had pelvic stinging in my left and right side in the pelvis. I first thought it was my ovaries causing me pain. The days went on and the pain was always there and developed to a constant pressure and feeling like something is bursting out of me. I wen to my Gyn and GP they didnt find anyhting. I started noticing that I also had problems with empyting my bladder suddenly (hesitancy, slow stream, thinner stream, slower stream). An urologist gave me antibiotics and everything went away after 3 days for 2 weeks, despite the fact my urine culture was negative. The pevlic pain and bladder problems came back and didnt go away one minute since then. I wake up with the pain in the left and right area of my abdomen and go to the toilet with those bladder problems. Many tests at my gyn and urologist and swabs and came back clear. Ultrasounds and MRIs all clear. Then they did a cystoscopy and urodynamic and found out that I had a neurologic disorder of unknown etiology which is causing my bladder to spasm. Well but I dont have any urgency. My main problem is the pelvic pain and discomfort with doesnt even stand in connection with my bladder (pelvic pain ist constant pulling, burning, stinging and doesnt get better or worse with bladder filling or peeing). I took a medication which relaxes my bladder muscle and I think it works as I am going worse to the toilet and need much longer to urinate. But the pelvic pain on the left and right area remained and nobody knows where it comes from. I am really desperate as I didnt have a free painful minute in the last 4 months and everyone is saying that I am healthy. Well clearly I am not if my pelvis is in pain and fire from morning to night time. Next step is a laparoscopy but I am afraid they wont find anything that could be causing my persistent symptoms.
Thanks for reading my story !
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mpx1
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So sorry to hear about your ongoing pain. You'll find people with similar stories here on the site and moral support too.
One of the problems is that with many cases of pelvic pain normal tests reveal nothing or little. A second difficulty is that it is often difficult - depending on where you live - to find a doctor who has qualified knowledge in this area and also the time to deal not only with the medical side but also with other effects such pain has on people. There are multiple causes for such pain - each person is different.
My suggestion would be to look for a specialist women's health physiotherapist - you can find one by searching for physiotherapist on this site and also using Mr Google. You may even find individual reccomendations. These people are usually very experienced and can help sufferers to relax and thus reduce pain. They can also provide further ideas about who else to consult. I hope this may give you a few starting points.
Thanks for replying I appreciate it! The problem is that I really can't wrap my head around the antibiotics which cleared the pain and bladder problems within 3 days.. Nothing else worked until now. The Urologists found the neurlogical bladder problem and are now fine to rest on it and don't even try to look for answers of the pelvic pain. And I don't really understand how an antibiotic should have resolved my "neurological" disorder for 2 whole weeks. Everything doesn't add up... They told me that my bladder has muscles from inside and that the bladder problems must have been an ongoing process over years. But I never had bladder problems at all not even an uti! I went 3-4 times a day to the loo and it was always a thick stream. From one day to the other that changed. Not even Ibuprofen helps with the pelvic pain I cant even describe this sort of pain. It just feels like something is eating me up from inside but I am not lying in bed in pain like I would be when I have my period. The constant pain drives me crazy.. I dont have a free minute... I just know that the bladder problems and the pain are related to each other. But I cant figure out what is the source and what is the symptom I pray to God that they will find the source at the laparoscopy as my body cant cope with the constant pain.. I am young and have so many more years to live. I cant accept that pain.
Hi I have bladder problems I can’t empty my bladder properly and sometimes I have got to self catheterise, and I also have PN and I know they are both related hope this helps plus I am on a cocktail of medication for the pain.
Hey thanks for your reply! I already had MRIs of my whole spine and my head. They didnt find anything suspicious.. So they call my bladder spasms "idiopathic" which may also be translated in "we don't have a clue of what is the root of your problems" :/ As I mentioned above the bladder problems aren't my actual problems but the pelvic pain on those two sides and doctors can't explain where my pain is suddenly coming from.
I am sorry to hear about your condition. It is so similar to many of us here. I would see if you can get a referral to a pelvic physical therapist for a good assessment and likely treatment of your pelvic floor muscles. In the meantime look for pelvic pain exercises on YouTube and try some stretches or yoga. Add one or two a day. Take it easy as you want to stretch the tight muscles. There are also some simple lifestyle changes that I did which have helped me a lot also. Change to a mild natural toilet tissue. I have a toilet seat bidet which has been wonderful. I am able to use very little toilet tissue. When necessary I have a squeeze bottle with a few drops of olive oil bases castle soap if needed for washing the perineum. Otherwise I use no soap on the vaginal/urethra area. Keep your stools soft so you don't have to push. I have urinary retention and flow issues and try never to push or squeeze when emptying as it will increase spasms of the urethra. I am past menopause so an estrogen cream on the urethra and vaginal area also has helped. Try and figure out your triggers and reduce them. For me it is sitting too long on a soft chair. Become aware of your pelvic muscle and relax them as much as possible. I know when I am in pain I tense them up and exacerbate the probem. Wishing you the best with this beast of an issue.
Thanks for your reply! I went to an ostheopath who pulled on my legs and did some of his "magic" but that caused me more pain for two days, even though he didnt really touch my pelvis which I find weird. On the other hand the constant pain has made everything down there very sensible I can't believe what is happening to me as those symptoms came out of the blue, went away with antibiotics (yes both the pelvic pain and bladder problems) and now they are constant even though I took the same antibiotics and others ... I did some pelvic relaxation excercises which were shown on Youtube for my pelvic floor.. Those "stretches" made it worse and I was in more pain for the next days.. I dont know where I should turn my head to. In my town there are no specialists for pelvic floor except for some clinics but they only specialise in bladder problems and incontinence I guess they don't really have a clue where those muscles are and how to diagnose those spasms if there are any. The urodynamic didnt show spasms of my pelvic floor but I dont know if this rules out pelvic floor tenderness/dysfunction. Do you or others suffer from the pain 24/7? As I am new in this forum I cant really compare my case to others :/ Thanks again :)!
My pain is not 24/7 but is daily for several hours in the evening until I finally fall asleep. I never wake up with it in the morning. It is a mystery to me although I know there are others with the same pattern as me. I have gotten more relief from the self-help things I have tried that others advised and trying to stay attuned to "what makes it worse" and avoiding the triggers. I am discouraged with how few and far between the professionals are that know much about and treat our conditions. I quickly used up all the knowledge the so-called pelvic pain specialist had that I went to in Charlotte NC. I quit her for that reason and because she was not listening to me. I have a neurogenic bladder and have a sacral nerve stimulator and a spinal nerve stimulator for back pain. Neither seems to help the pelvic pain. Because I self-catheterize twice a day I take a suppression antibiotic or I would get frequent UTIs with awful spasms. I switched to Bactrim and the have had no UTI's since and my pain does seem less. I do get pudendal nerve blocks from a pain management specialist that relieve the pain for a couple of weeks but at least that is a short help. At least he listens and is trying to learn more to expand his knowledge and help more with pelvic pain.
Did they check the pelvic inflammatory disease at all? Because that can start very suddenly. Did the pain started after your period immediately? I am thinking because you said the antiboiotic worked for 2 weeks, so I think there is some kind of infection. I am in the same situtaion, I have this pain for 10 months, no explanation, but it started after my period, but still they say I do not have PID, because every test come back clear, swabs, ultrasound, etc. I took 2 weeks doxycikline and 2 weeks metronidazole together, but I did not feel any relief after that. Also I have vaginal itching, and all the swabs clear. I had in this 10 months 5 std/bv/thursh swabs and all of them was clear from the beginning. Never even once tested positive for bv, or thrush, or any std, and still I have this itching and pain. But the pain started after the period. They said I do not have white blood cells in the swabs, no infection. Ok, but why is it itching. It can not be allergy, because I changed everythng, and I can not see any redness there. Did you have blood test, like CRP, white blood cell count etc?
They ruled out PID as of my history of being engaged to one partner and the swabs and the cytology being negative/not showing any bacterial, fungal growth and/or STIs such as chlamydia and gonorrhoe. But for me it feels like an infection from the inside! My inside is always in pain and burning.. but not in the middle. The pain is always left and right and sometimes goes to or above my hip bones.. I really hope the laparoscopy will show an infection The doctors cant explain why the antibiotics worked and are clueless as always. My CRP and blood sedimentation rates were always fine, which encouraged my doctors to tell my that my pain cant come from an infection. Doctors are always confident in telling you what you have not but cant figure out what you actually have and why you are suffering. -.- Did you undergo a laparoscopy? Maybe this would shed some light on the problem. The vaginal itching might go down if you use some lactic acid capsules?
Which antibiotic was working for you? I took 2 weeks doxycikline and metronidazole together, but I did not feel anything different after them. I had 5 blood test, like CRP, plasma vicosity, white blood cell count, and others, and always all of them was normal. When you had gynecologist examination did you feel any pain when they pressed around the ovaries? Or when they touched, moved the cervix? Did they say anything of the cervix? Because if someone has pid the infection first starts with the cervix. And some people are lucky and the infection stops there, do not go upper, but if the unlucky ones get the infection upper as well. So it is starts with the cervix. I read the gonorrhea, chlamydia etc always infects the cervix first, so there should be a sign of an infection. I also somethimes have burning inside but the middle section. And I have pain somethimes the lower right side, sometimes the left right side, or the back, right or left, changes the sites. Do you have more pain with your period (if you are not on birth control)?
The antibiotic working for me was Cefaclor. It’s a cephalosporin. Took the same again 3 weeks after it started again but nothing changed, took fosfomycin and doxycycline (But only for 5 days without any improvement so I just stopped it). I always feel pain with and after the gynecological exams. And after sex. Before this all started I never had pain while or after those exams my cervix had no signs of infection but I always use MultiGyn Actigel which restores my cervix after several years of having infections. My cervix Looked normal on every exam and my Pap smears were also alright.. I never had pain like this also before. The pain can’t be compared with pain I felt from my uterus or ovaries while being on period or when you occasionally have pelvic pain.. I can’t get my head around it. Do you have your symptoms every day 24/7? Or is it intermittent at least?
It was constant for about 3-4 months, from July till December. Then I started to have pain free period. For example pain before bleeding, pain while bleeding, pain after bleeding, than pain free for 2 weeks or 3 weeks so. It depends. Every month is different regarding the pain level or pain free days. I really can not make any deceison why I have pain free period in the middle of the cycle and next month I have pain in the middle of the cycle. I suppose the ovulaion, but I always have that kind of ovulation discharge, so does not make sense why is pain free for one month, and the other month is painful. And I always have that I have pain for example for 5 hours, then it stoppes for hours, then starting againg, or pain free one day, the next day painful, then the third thay painful again, the fourth day painfree. I have every combination.
The capsules restore your vaginal flora so I put them right in there. There are also Gels with lactic acid that you can use to put the good bacteria in your cervix to fight infections.
What do you think why I always have burning after theses capsules? I tried 4 different kind, but after 2 days is always cause me burning. I tried Lactofeel capsules, and after the capsules was inside, immediately started to feel burning. I tried a different one, I could do it for 2 days, after the second day burning again for a few days, then burning stopped. It supposed the help, not cause more pain. I do not get it. And all the swabs negative.
Hey!! I can really understand you! Most of those capsules started burning with me too! I then used a gel named multigyn! Try look it up! It burned the first 3 days and then it didn’t anymore!! The burning showed me that there was something wrong with my flora. Since first using it I didn’t have any infections. And when I feel odd I put the gel in and everything is fine the next days!
I tried ph balanced capsules, boric acid capsules nothing helping, make it worse, and I always get burning inside the vagina after these capsules, I tried 4 different ones. And they say nothing on the swabs.
Sounds like nerve issues. Google Dr Arron Filler in Santa Monica, Ca its his specialty a nuero surgeon.
Also pls see a colorectal dr they can give you a pelvic rectally without hurting you. I have been in pain for 16 months not 5 minutes of peace But better then I was a year ago because i pushed to be heard everyone deserves a pain free life Or at least a reason for pain, diagnosis so you can get the proper treatment.
i too am like you but i had a hysterectomy botched that start my 16 month hs of hell!! Feel free to PM me i will share my story in great detail.
You can also try to see an obgyn oncologist they know pelvic structure like no regular ob. They treat more then cancer.
Sounds like nerve issues. You would be surprised what they can do. Feel free to PM you sound similar to me. Neuro surgeon is a good bet the only one who helped me was Dr Aaron Filler google nerve med in Santa Monica. Im still in pain but no where near where i was before this man.
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I already had MRIs of my whole spine and my head. They didnt find anything suspicious.. So they call my bladder spasms "idiopathic" which may also be translated in "we don't have a clue of what is the root of your problems" :/ As I mentioned above the bladder problems aren't my actual problems but the pelvic pain on those two sides and doctors can't explain where my pain is suddenly coming from. 
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