Hey everyone! So i feel so happy to have found this place! I already feel that people will understand. So I've had unexplained pelvic pain since February, i have had various possible diagnoses every time I've been back and forth to the doctors; appendicitis, kidney infection, kidney stone, endometriosis, ovarian cysts, IBS, abdominal migraine. I guess u have all had these or similar diagnoses too! I was referred to a gynaecologist and have been booked in for a diagnostic laparoscopy in hopefully the new year to check for endometriosis. I had an ultrasound and she did ask me if I've had an operation previously so i don't know if she saw like adhesions or scar tissue? I haven't though had an operation before but my scan was normal and nothing was said as to why she asked me that? I'm hoping that whatever is causing me pain is picked up by the laparoscopy and can get back to some sort of normality!
Pelvic pain for 10 months...and count... - Pelvic Pain Suppo...
Pelvic pain for 10 months...and counting!
Yes a lot of us still don't really have an exact diagnosis....we have all been to a lot of doctors and some have had procedures ..some work,some don't....where is your pain exactly?a lot is nerve/muscle related so it's meds that usually help to calm everything down...some go into remission and some don't...some will have ongoing flare-ups...it's just a matter of realising it's a life change that may bexome a new normal....
Hi
So my pain is predominantly right sided pelvic achy, cramping pain. It has recently spread to my left side but not as frequent and painful as on the right. I also get a frequent urge to urinate and sometimes it's like a waterfall but other times have to strain and only a bit comes out, don't really suffer with diarrhoea or constipation. My right leg also aches and feels heavy when i have the pain. Yes, i think that's the hardest thing is adjusting to the new normal! What are your symptoms and do u have a diagnosis?
Jo
Yep I had intense rectal pain which they think a fissure started the spasm but he couldn't see a fissure any more so he thinks it started a spasm in pelvic floor (rectum area)it was a year ago and I needed up with a pelvic floor physical therapist which has helped a lot. Also cyclobenzaprine muscle relaxer,home stretches and deep breathing,I also have gabapentin if I want to try it ... But w think the rectal branch of the pudental nerve is irritated even though the spasm is better it takes the nerves years to heal and there may be damage there...had a CT scan an MRI and nothing shows up so no w I may get an MRN which is a nerve MRI... To be honest. I'm sick of it all and I don't really want to go through any more tests until I take a break because mentally as you know it's a very debilitating I just stay busy and I sometimes do sitz bath because sometimes it starts flaring up after a bowel movement but I've had weeks here and there I have no pain at all and I think we're on the right track and then the pain will flare so I just think it's a lifestyle change now at this point...I saw the gastro the other day and I told him I stopped gluten and I stopped dairy and I'm taking strong probiotics so the IBS has been way better but I just feel that once you've had this condition it's very hard to come out of it but you can get a lot better with the right treatments.only other test I haven't had as a colonoscopy because I was afraid of the prep would start the spasms off again but the gastro said I absolutely have to do it and just deal with the spasms afterwards because he has to look inside the colon and the rectum !!!so much fun and games at this stage of life. Ugh!! I keep counting my blessings because some people get it very young but you know people with ulcerative colitis and Crohn's disease can get remicade infusions and theyre normal in between with us is just Hit and miss treatments
Oh bless u, yeah i totally get when u feel u need a break and just not have to think about it for a while! My cousin has Crohn's disease and she has the infusions but also on a very restrictive diet. I would say go for the colonoscopy when u feel ready to, it may pick something up but mentally u have to be ready for whatever outcome. Hope u get some answers soon!
Suffering with rectal pain for five years due to a removal of hemroids. hit a nerve I am told causing pudendal neoropathy,I live on oxicodone sometimes it works and days that it doesn't . I have had every test known . This is no way to live
Oh Rozamund, I'm so sorry to hear that. Will it get better do u know?
it sure doesn't look that way. I am desprate for some kind of answer this is no way to live.The pain dr just hands me a script gives me no hope and walks out of room. I am sick of procedures an therapy with absolutely no relief. I guess there is always worse I hate to complain.
I haven't been here in awhile. I hope things are looking better. I've found a doctor in AZ with more advanced diagnostic and treatment techniques. I'm starting up with him again soon. My first effort will be trying his suppository concoction that he claims helps many of his patients with pudendal pain. It's a combo of valium baclofan and ketamine. Suppose to help retrain the neural pathways as it gives pain relief. Starting it tomorrow so hoping for results. I hope you've found someone to help .
I had the same thing pain for 8 years before referral to a gynecologist. I had MRI scan and ultra sound done and nothing came up on the mri but I had a cyst outside my ovary on the ultra sound. I had the laparoscopy done in July with nothing to be found.
During this time I was seeing a pain doctor and he thought that my problem was genitofemoral neuralgia. I had steroid injections to my nerves which helped me so much with the pain. It literally stopped but started to come back but not as much as before. I’m now doing physiotherapy to help with the pain I experience when I exercise.
Have you had a tubal ligation with metal clips? They can fall off and migrate to our bladder, rectum, anus, intestines and other places in our groin.
No, nothing like that
I had tubal ligation Whereand how did u find this out
Yes I had a tubular ligation many years ago. How would I go about finding out ?
hello and yes you are in the right place ...my advise to you is to find a pelvic pain dr. a specialist that deals with nothing but pelvic pain issues I went 1 and 1/2 years from dr. to dr. and e r visits (more then I can count) you have to go to a dr. that specializes in this field it has been my experience that a reg. gyn and even some uro/gyn's don't have a clue about nerve pain...so if you are getting multi opions do yourself a favor and see a pelvic pain dr. mine turned out to be pelvic nerve (3 different nerves) I had one gyn tell me I needed a hysterectomy and I didn't so do your homework I hope this has helped....I don't know where you are located in the world but there is a dr. in France and 3 or 4 in the states Good Luck
Thanks, yeah I'm going to see what they say when the laparoscopy is done and go from there. Thank u for your advice and I'm based in the UK
a dear friend of mine is also in the UK and had to go to France for a proper diagnoses ...not to scare you just trying to get you to the right place I suffered way to long not knowing what was wrong with me now I suffer knowing why the pain is there I am lucky my pain moves and I am able to take some herbal supplements that have helped the pharmicatules didn't help me Good Luck
Which herbal things helped?
hello I take valerian root with hops.. I take them in pill form of each up to 3 times a day it took a while for it to kick in maybe a few weeks but it truly helps me I also take marshmallow root tea with slippery elm..the tea I make in a qt. size bottle 4 tablespoons of the herb to the full container of water and I strain it and drink it 3 times a day before meals with the slippery elm which I take in pill form it helps with bladder pain...good luck I hope it helps
Did you have tests towards STD-s as well? Can you remember if any situations happend before the pain? I also have unexplained pelvic pain.
Yes I've had them twice and both came back negative. No, the only thing that happened 2 days before the pain came on was i had a dizzy spell that I'd also had around Christmas but haven't had any since so i don't think they're related. Where's your pain and how long have u had it? Have u been to your GP?
I have this pain from July, all the blood test (inflammation etc) negative, had ultrasound transvaginal once, negative, abdominal twice, negative, GUM clinic twice, negative, gynecologist examination negative. The pain is in the lower abdominal but changes the location. Sometimes I feel it right side around the ovary, other times left side around the ovary, sometimes lower back, or right lower back. So it is never only just one side. I had urine test, negative. All the examinations are negative. But I have also vaginal itchiness and sometimes burning and all the swabs are negative. I have more pain before the period, on the period, and after the period than before. Do you have more pain when you have on your period? I do not take the pill. Is your pain changing the location? I have a gynecologist appointment in 6th of January, and I am planning to have a new GUM clinic test (I did not have any intercourse from the last two negatives test).
Good, glad u have an appointment to see a gynaecologist in January, hopefully they can finally get to the bottom of it! Mine has and is still on my right side but recently has started in the middle and left side but only occasionally whereas right side is constant. I don't have periods as mine stopped in 2009 when i went on the implant so haven't had one since so i can't time anything to my cycle which has proved quite difficult! Hopefully we can both get some answers in the new year!
When will you have the laparoscopy? How is your pain? Did you try to take antibiotic from february? Is there any chance maybe it is pelvic inflamation disease?
I've got my surgery on Monday so hopefully they will know what it is but preparing myself for if they find nothing. No i only took antibiotics when they tested my urine i think in April and they thought i might have a kidney infection but only took 2 days as they then said i don't so don't need to finish the course. I have thought about it but nobody has mentioned it so i don't know if that's because they haven't thought about it or because they don't suspect it. Pain is still here though. How are u? Did u see a gynaecologist? Let me know what they said when u can 
xx
When will you have the results? Please let me know about it!! I had gynecologist appointment on Monday, but it was useless basicly did what they did in the GUM. I still have no answers. All my bloods, examinations, swabs, STDs, ultrasounds are negative. I am still the same like you.
Oh no, bless u, i really feel for u, it's horrible not knowing and that's what I'm most dreading on Monday. Yes, i will definitely let u know if they find anything. I know it's hard but keep going back to your doctor, don't leave it as something is causing u the pain, i really hope u can get some answers soon xxx
I was in a similar situation to you and can definitely sympathise. I’ve had severe pelvic pain since June 2016 and have been through a lot of procedures and hospital stays. It’s an incredibly difficult thing to cope with.
Hey everyone, so i had my laporoscopy yesterday and nothing was found. To be honest, i was half expecting that and I'm not as disappointed as i thought i would be. She mentioned it could be to do with my bowels. Has everyone on here had their bowels checked too? I don't get noticeable constipation or diarrhea but i have read that the changes can be subtle so i will explore that avenue now with my doctor. Hope everyone is doing ok.
Hi! Is there any news? New examination, diagnosis?
Hey, no not yet, had my smear test 3 weeks ago, and did a stool sample and blood tests last week so just waiting on the results from them. How about u? How are u doing?
Hi! Thank you for letting us know. I read on other sites that many times they do not find anything with laparoscopy. You said that your pain is quite constant. Do you have times when it is changing in the intensity or always the same pain? On the right side where? Around the hip, or around the ovary? Is it lower pelvic pain close to the groin, ovary? Have you read about pelvic floor dysfunction? I read about a lot these days. I suppose you do not have pain with urination.
Hey, so the pain is constant, there are a few days where i have no pain but most days it's there, it's like period pain and from my hip upto my waist and is at the front, side and back. It's the same type of pain and same intensity pretty much, no pain with urination or bowel movements and doesn't relate to eating. No pain near the groin although recently I've been getting central lower pelvic pain and on the left as well but not as much as on the right. No i haven't but I'll have a look, i guess the other places to look would be my bowels and possibly my kidneys? Although when i had an ultrasound and blood tests, my kidneys looked normal and they were functioning fine but my paternal grandfather has problems with his kidneys. 1 of my maternal cousins has Crohns and 1 of my maternal aunties has colitis so i guess it wouldn't hurt to check both of these?
Your symptoms sound so similar to how mine were! I never got a diagnosis but I luckily stumbled across the Curable app and I am now back at work pain-free most of the time. Check out the app and read the reviews and listen to some of the recovery stories and some of the education audio files. That’s how I realised the Curable app could help me, and it really did. I also bought Dr Sarno’s book The MindBody Prescription (Dr Sarno is 100% the king when it comes to curing chronic pain, plead look him up!). I wish you all the best with your recovery. I got to the point where I was barely able to leave my flat because of the pain and in despair that doctors weren’t finding anything. Now my life is almost back to normal within two months
Wow, that's great, so glad u are mostly pain free now! I will be sure to have a look, thanx!
Definitely check it out! I found the app just when I’d lost all hope as the final diagnosis I thought it could be was ruled out. I think it’s important to have had got to that stage to fully give the app your all. I chose to 100% believe that that approach could work for me, and it did
Hi! I have the Sarno book, but I still have to read it. Which one helped you better, the book or the curable app? Did you pay for the curable app, or did you use the free version (if there is one). Do you still use it?
Hi! I’d say the Curable app helped me better as it has so many stories on there of people’s recoveries and interviews with doctors etc, along with the up to date neuroscience research around pain, which is lacking in Dr Sarno’s old books as they were written quite a long time ago (but the app is based on Dr Sarno’s ideas). You can access quite a bit of the app for free I think! But they’re also doing 50% off at the moment. There is also a Facebook group called ‘The Curable Community’ where everyone is such an amazing support to each other
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