I posted a few weeks ago about pain ive been having in my pelvis and the whole unregar periods and all sorts. Ive had several urine samples, scans, blood tests, all pointed to nothing.
I had another ultrasound on Monday, it came back with what looks like Polycystic Ovaries, however, ive been told this is not what is causing my pain. Theyvre tried to take more blood to no avail, i have very difficult veins. Ive been referred to Gynae and have another attempt at a blood test in 1 week, but how long can i be expected to wait for Gynae? This pain is starting to grind on me now, i get sharp pains low down left side and a constant dull ache, no painkiller touches it and theyve gave me everything they can. They are going to attempt to rush through the Gynae, but has anyone experienced similar to this? Please review my earlier post for full symptoms but theyre basically:
-Pain during intercourse, deep pelvic pain
-Constant dull ache, started about 8 weeks ago, occasional shooting pains on the left hand side just above bikini line
-Horrendous period pains, this was managed with the pill for years, came off it and went on the injection but the side effects of it were horrible so cane off it January last year (2018) and havnt had a period since.
- Tired constantly
- Needing to wee alot, pain in pelvis 7/10 times
Im at a loss, no pain relief as tried everything they can give me and still no end in sight as to what is causing me to feel like this.
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BlueRedBerry
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No, i havnt had a laparoscopy. I went back on the pill for a short while, but had no periods and it was too painful having sex so i didnt see the point, why have contraception if i cant even have sex and it isnt taking away any pain? Seems pointless to pump my body full of drugs to prevent a pregnancy when i dont stand a chance anyway because i cant have sex? Id rather find the issue thats causing it. Fibromyalgia has not been mention, only PCOS.
Hi, i have the same symptoms as you, since 2006 or around that time, 5 or 6 years ago whilst on holiday-ended up in a thailand hospital for something unrelated-they found something in my womb when scanning me for something else, came back to the uk with all the details, they failed every-time to diagnose me, im still going for appointments to have this diagnosed, but in thailand they told me it looks like i have 2 issues, 1 is fibroids, 2nd looks like endometriosis, but until they examine they wont know, i thought coming back to the uk to get treatment was the best move-it was actually the worst move i ever made, in thailand they were going to treat me right there and then-remarkable care. The best care ive ever received in my whole lifetime. im born in the uk-but find the health system here is not helping me, im now too old to have children, and spent the best part of 5 years depressed because of this, i blame the uk medical health system for abuse and cruelty and the cause of me being childless. they are constantly canceling appointments on me, rescheduling appointments and still to this day they have not treated me or given me any explanation, They dismissed all the findings that thailand doctors gave and said they have to do their own tests, i now feel this is deliberate to make me more sick and put me at risk, and to prevent me from having children-considering ive been complaining about this since 2006 or around that time. they are sending me an appointment for a camera to investigate in April this year, wether that happens or not time will tell, but im left with the fear that they can burst my bladder whilst doing this test and i could end up with a catheter fitted.....welcome to life on the NHS.......if i do have this test done and get the results i will let you know, as our symptoms are very much the same, down to the pain i have above the bikini line which is happening as i type........
Im so so sorry to hesr about what you have been going through, it sounds horrendous and nowhere near my experience, you have suffered for so long and i pray you get answers! Im waiting for a refferal letter, i have no ides how long that will take, but i hope its fairly quick as they cant treat the pain at the moment as they have maxed out every option available to them, so the route cause needs to be found before ill have relief. Having PCOS was a shock, it fits most of my symptoms, but there is obviously something else going on for me to be in pain like i am and having the other issues that arnt typical with PCOS. Have they never even gave you an indication as to what might be going on? I really feel for you and i hope the camera procedure your having will shed some light. Do you know what procedure it is your having? I know people can have luck with Laparoscopy’s as they are the only definitve test for certain conditions. How long have you waited for your appointment from your initial referral? I suppose youve been waiting so many years now
Hi BRB, im ok, thanks for your words, very kind of you..... whats PCOS?????
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Its been 5 or 6 years since the Drs in Thailand diagnosed me, or gave what they thought it was, i think im now into my 6th year, but ive now lost touch with the years to be honest, they said they were going to put a camera through my belly button and through a small incision just above the bikini line.....i think thats the laparoscopy that you mentioned, its a longtime coming, ive kind of given up caring-i think when you've lived with it for so long knowing that its stopped you from having kids-that you dont care what it is anymore, but i hope whatever it is wont kill me-or i.ll be fighting for my life and not just an examination, LOL...not much to laugh about really, but if i dont laugh i.ll crack up.... ive got various health issues and thats why i joined here, headway gave me the heads up that they have a chat page-so i joined it, im in shock at the amount of people on here who are suffering...it makes me think what the hell is going on in our health care, that people have to join a chat group to share their traumas, when all we need is medical help right!!!!!!!!! it makes me angry to think all these people who studied medicine and a medical profession-where are they-where is there expertize-where is there diagnosis etc etc, what are they doctors for if they cannot treat patients---its like were aliens from another planet and their trying to suss out how our wombs work!!!!!! it puzzles me.........
PCOS is Polycystic Ovary Syndrome. And i bet, must be terrible having to just live with it for so long, im stuggling and its only been a few month and im ready to crack up! I hope you get answers i really do, i hate knowing there are so many other people in the same boat just wanting to be pain free and know what is wrong!
What...OMG.......well, ive been to sexual health place multiple times, they say all my tests are clear, even they said that i needed to be checked to see what my pain was and said they would refer me, that was 10 years ago and nothing ever happened, no referral ever came, ive been to an "apparent" top gynae dr in salford oaklands hospital and he failed to treat me or diagnose me properly also, no one listens to me - ive had more response for my medical conditions on here in this forum/group chat than any DR in over 20 years, I feel i want to leave this country as i feel DRs'/SPECIALISTS are killing me slowly!!!!!!!
Yes. Demand to be treated for it. You can have PID without a sexually transmitted disease. I got it after I had unprotected sex on my period, and bacteria found its way up into my cervix. I’m from the US so idk how it works in UK, but you need to be treated ASAP.
OMG, what the hell is pelvic inflammatory disease, ive never heard of all these womb problems ever, never had a sexual transmitted disease ever, i try to use protection as much as possible, but who knows what my partner or previous partners have been upto without me knowing, possibly putting me in danger, or should i say im putting myself in danger by not wearing protection with my partner all the time......i can't trust anyone these days-its crazy..... what the hell is going on with these doctors-what are they being paid for, to misdiagnose us..... how long did you have this disease before it was detected??????? can you die from this??? you better tell blueberry-as we have similar symptoms......
Pelvic inflammatory disease is when bacteria from a sexually transmitted disease, or just other types of normal bacteria, go past your cervix and reach other reproductive organs. The bacteria can cause an infection. I think it can be fatal according to what I’ve read online, but the most important thing is that it can cause infertility and chronic pain. I totally understand where you’re coming from, doctors, even specialists, don’t really care about finding solutions to difficult problems. They just do regular testing, throw antibiotics at you, and expect you to get better. I had mine for about a month before I was diagnosed. My first symptoms were lots of chills, heavy watery discharge, G.I. problems, and then the pelvic pain started.
wow.......scary stuff sister. well if ive had this since 2006 then my whole insides will be utterly destroyed, and im now passed the age where i can have children, so im just disgusted at the UK health care system, shame on all of them!!!!!!!!!
Here in Canada, I feel the same way. Doctors are no longer listening to patients, caring about patients and examining them properly. Having to be your own advocate when you are tired, in pain and emotionally weak is so unfair! I feel your angst.
I wish you could have a laparoscopy. That surgery could look for endometriosis, Cysts, growths etc. Find a caring gynaecologist....if you can. You’ve been brushed off and it’s happening regularly to women. Don’t give up.
Konagirl, we need a revolution........ we need all our girls, women to study medicine and healthcare, to take the jobs from those who are not doing their job!!!!!!!!!!! Are you ok?????? are you not getting help konagirl???? are they treating you????? This seems to be slowly creeping around the world, i said in previous posts that i feel this is AGENDA21 and the depopulation program!!!!!!!!
I am 100% sure you have pelvic inflammatory disease. I was just diagnosed with it and my symptoms match yours completely. You don’t even have to have an STD to get PID. Go to the hospital right now and demand to be treated for it. Don’t take no for an answer because PID can cause severe damage if not treated quickly.
I totally agree, sounds like PID. Hospital can give you antibiotics for it but get yourself checked out at a & e so you can start treatment soon. Let us know how you get on.
I have had all tests for infection and all came back clear, urine, bloods ect and i have already had a course of antibiotics while waiting for blood and urine results to come back.
You need to ask for a laparoscopy. All my swabs, urine, scans were clear but i demanded a laparoscopy. It showed i had lots of free fluid in my pelvis along with small adhesions which were caused by an infection and ultimately led to PID. When they tested the fluid it came back negative - how i dont know! However, im still suffering 2 years on and am going to ask for another laparoscopy in case anything was missed. Its a much better way for them to see whats going on, would highly recommend you asking, it may pick up endometriosis or infectio
Have them do a pelvic ultrasound. It can show inflammation and fluid in your Fallopian tubes. There is no way to diagnose PID except through your symptoms, so of course your tests came back clear. I’ve had PID twice now, and both times I’ve had to be on long term antibiotics to clear it—one round of antibiotics will do nothing when you have a severe infection. You need to advocate for yourself with this because most doctors are pretty dense about diagnosing and treating PID correctly.
Thanks FingerGuns. Can i ask how long you were on antibiotics for? I just get the standard week or 2 weeks, all is fine for a week then bam, discharge, horrendous pain, bloating, extreme fatigue. Im going round and round in circles. No one has bothered to put me on an extended course, even though ive asked nor have they given me IV antibiotics. Now ive decided as soon as the pain strikes im going to a & e and i will continue to do so until they figure this out. Ive just gone to my gp in the past apart from 2 occasions, now i realise this all needs to be documented. However, trying to work and look after 2 children and get to a & e is challenging which is why ive always been hesitant but enough is enough now
The first time I had PID I was on 5 weeks of doxycycline and also received two shots of Rocefin (not sure what it's called in the UK). My symptoms were getting better after two weeks but were still very intense. I just kept having my gynecologist and GP prescribe me more, until I thought that all the symptoms vanished right after starting the 5th week. Nope--my symptoms came back within a week or two. So, I am dealing with PID again right now. This time I asked my gyne to give me 2 months of doxycycline. I just finished my first week, and my symptoms are healing so much better this time, so I think that 2 months will definitely be enough. I probably don't even need 2 months, but I want to be sure that all the damn bacteria is gone so I don't have to go through this again.
I would suggest going to a gynecologist who can help you manage this better, and understands what is going on. They normally only do IV antibiotics if the symptoms are severe, however, since this is has been going on for a while for you, it's worth a shot asking about it. They can also give you shots. Also try to eat healthy and "starve" the bacteria--don't eat sugar or carbs and try to get most calories from fat and protein. This will help your body heal.
I hope you find relief soon. PID is the worst but with the right care, I know we can overcome it!
Thank you FingerGuns. Trying to convince gynaecologists and GPs that I need a longer course of antibiotics is what I've been trying to do for the last 3 years. I had so much fluid in my pelvis when they did my laparoscopy, even the gynae was surprised. I felt sure they would give me IV or a long course but they insisted the 2 weeks was enough. Well it obviously wasn't because 3 years on and I'm in the same position, antibiotics for a week or 2 then clear for a week then bam its all back again. But because the swabs and fluid come back clear they don't believe I have an infection at all. I believe they took a sample of my fluid and that came back normal and they refuse to believe this can be caused by your own natural bacteria. I know my body and I know from the amount of discharge I have that ive got something like bacterial vaginosis that travels high up my cervix and causes PID. What they are not listening to is the fact that when I take metronidazole every single symptom diminishes, my stomach goes from looking like I'm 4 months pregnant to completely flat. But thank you, I'm seeing my gynaecologist in 2 months time and I will demand a longer course of antibiotics. I'm glad that at least your GP and gynae is listening to you.
Yes, I would say that your doctors aren't listening you very well. Honestly, last time I was at the doctor, I had to be extremely stern with him. Because he wasn't listening either! He tried to tell me that my PID symptoms were because of my period. Ugh. I had to argue with him. He finally gave in and prescribed a month of doxycycline. I asked him to please give me two months instead of just one, since last time, my PID took 5 weeks to clear. He reluctantly agreed. Nikki, this is your health, your body. You have to get firm with your doctors! I'm not a confrontational person either, but I had had enough. These doctors have some kind of god-complex and don't want to listen. I would recommend seeing a female gynecologist who can actually empathize with you. I'm so sorry you're going through this, and I understand some of your frustration. Once you get the proper medical care this will all be over, and you won't have to worry anymore or be in pain. Just have to hold on for a little while longer and fight for yourself!
Thank you finger guns, thank you blueberry, nikki74, you have all helped and we are all in need of proper medical care - which some of us are not getting, im now at the stage where i want to make a complaint about the NHS for misdiagnosis, non diagnosis etc etc its just not good enough, these people are supposed to be trained specialists and they are failing hundreds of women, i feel as though im hated and that my womb is not important to these doctors, and its probably true, they get paid regardless of my conditions., thank you to all fellow sufferers for your input, i wish you all get the help you need, if you dont - then i suggest you leave this country and seek help away from the uk and the NHS, then make a complaint and have all these DRS investigated!! i will die fighting for the help i need and i will die fighting for all womens health to be taken seriously, peace and love to you all....thanks again xxxxxxxx
Yes!! Never give up—fight for yourself and then come back to help others. The reason I joined this site was to help other women going through this. I have had to advocate for myself to get proper treatment. I’m from the United States and healthcare is horrible here too.
PID is a horrible disease and must be taken care of. They need to put you on a long course of doxycycline (not sure what it’s called in U.K.). Furthermore, a vaginal ultrasound will show inflammation and fluid buildup. Do not take no for an answer and get the help you deserve!
Yes, I’m in the United States. I don’t know how I found this forum lol, but I want to help. The American health system is bad too, because since we don’t have universal healthcare and pretty much only have private insurance, doctors just charge you whatever they want to charge you and do a lot of unnecessary testing. They have little to no time to spend with each patient, and they don’t really care about finding solutions. I went back to my doctor after my PID returned, and he tried to blame all of my symptoms On my menstrual cycle. I was like what the hell? I’ve had my period since I was 11 years old, I think I know what it feels like. And I had already had PID before and knew exactly what it felt like. I really do not trust most of my doctors anymore.
You know what, please dont take offence, but the uk is becoming like usa.... im terrified for our future women, i feel all women should go through a nursing course as soon as they finish school here, as the health service is becoming worse, i was only talking about this a few days before you put up yr post-i was chatting to my friend about the usa healthcare and thanked how we dont live there...sorry!!!!
Girl, i thank you for being on here - i feel as though the time ive waited for results that i could have trained as a womb Dr and be on here looking for my patients to treat!!!!!!!!!!!!!!!!!
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OMG the more i read the angrier i get, this is a war against vaginas'...... wheres my god damn gas mask, rifle and back pack - im off to fight i am!!!!!!!!
I know exactly how you feel. I started having another issue in August that isn’t related to P ID. But it felt like a yeast infection and a UTI at the same time. I went to countless doctors and took countless medications, and nothing helped then one night this idea, which I think must’ve come from God, came into my head that maybe this was something bacterial that no one had told me about before. I started googling other vaginitis Conditions. I came across lactobacillus overgrowth syndrome. My symptoms matched the description completely. The treatment was a no sugar diet and baking soda baths. I started the treatments, and within three days I was feeling about 50% better. So yeah, I am pretty angry that I suffered for six months, and nobody helped me, And the treatment was as simple as giving up sugar for a little while and soaking in baking soda water.
OMG, wow, your now your own doctor, well-done for treating yourself, i hope you get better, but still go and get it checked out, do you have sexual health centres over there????? i have salt baths regularly too, but i eat sugar like its LIFE, maybe i should give it up, hhhmmmm im gonna detox from all sugar, you've inspired me!!!!!!
It is awful how women are being treated. Ive suffered first hand with the nhs at the lack of care. Even after a laparoscopy which confirmed PID they dont believe me that another 18 months on i can still b dealing with it. Ive been told its impossible that ive been suffering for 3 years on and off with it. My symptoms are classic, yellow vaginal discharge, severe pain in pelvis and back, nausea, frequent urination and a swollen stomach and thats only a few. Not once have they got me in for IV antibiotics just throw more oral antibiotics at me. Because swabs come back clear they dont believe theres an infection even though the fluid they found proves it. If i take metronidazole every single symptom diminishes. Its now got to the point i am so sore down below i cry each day, thats because whatever infection is in my system is being left to take hold. Ive been told to have a hysterectomy and see if that helps the pain and if not then they know its not gynae related!!! I know my body and i know im fighting an infection. Unless they can pinpoint something written in their textbooks they can only offer hysterectomy, its appalling. I really feel your frustration ladies
I'm so sorry to hear that Nikki. I am so frustrated too. Doctors do not listen to women... I had several doctors try to blame my pain on tons of things: my period, psycho-somatic pain, IC, allergies, etc. It really is horrible. If you aren't finding good care, I would try to get a prescription for doxycycline a different way. Maybe even go out of the country. In places like Mexico, the pharmacist can give you a prescription for things based on your symptoms--no doctor visit needed. Here in the US, fish stores sell doxycycline for fish tanks.
Thanks FingerGuns. I have had friends tell me to go to Europe and get treatment, I am close to taking their advice as 3 years on and no further forward, something has to change! Ive tried doxycycline but it didn't help, the only thing that has helped is metronidazole, it literally gets rid of all symptoms. No painkillers in the world have helped so I know I'm dealing with inflammation or infection of some sort
Niki, thats disgusting, now they want to remove your womb!!!!!!!! Is that all medical science can up with, remove her womb and see if that helps, but if it doesn't then oh well, never mind!!!!!!! seriously im so annoyed for you - im sick of the NHS it stands for NO HELP SISTER or NO HELP SERIOUSLY!!!!!! NO HELP SICKOS''''''''''' sorry everyone for my anger-i know it doesn't help and its not productive, but please-can no-one see how hundreds/thousands of people are being mistreated by NHS, im sure this is deliberate - im positive its deliberate - what the hell are they learning for 7 years at university, how are these doctors getting jobs and passing their exams, then as soon as they get a job in their specialised field-they start playing with LIVES!!!!!!!!! They are telling you that they dont believe that you have problems-W.T.H!!!!!!!!!! is this just MALE drs or is it FEMALE drs mistreating us also, every dr i see is MALE, the only female ive spoke to since 2006, was a support nurse to help me deal with never having children-i sat and listened to her B******** for half and hour and never went back, i can't have children because they have failed to help me fix the problems ive had since 2006....niki ive had all sorts of excuses given to me also-about why im in pain, from "its memories from your childhood" "its because you smoke" "its the menopause" ive heard it all niki.......i think what can we do as women-is there anything we can all set up together for better care???????
Fingerguns made a good point-we need to leave this country and find help ASAP, Mexico, Thailand, indonesia they have all the best healthcare for women, it took 10 minutes for a DR in Thailand to tell me i have a Brain injury, it took a DR in Thailand 30minutes to tell me i have a growth in my womb, (and i wasn't even there for any of that-it was an emergency appointment for a kidney stone-but they found other problems with me and wanted to help me)...... its taken 7 years for the NHS in uk to diagnose my brain injury, its taken since 2006 for a diagnosis of my womb and im still waiting for the diagnosis!!!!!!!!!!!!! thats corruption or lack of care or both!!!!!!!!!!!!!! we are being used as experiments in a lab rat scenario!!! Niki, save money and travel for help, i feel i want to do this and go back to the hospital in Thailand that found these problems in 1 day.....1 bloody day niki!!!!!!!!!!!!!
Im waiting for a GYNAE referral, i dont know how long it will take and neither does my doctor. Shes trying to rush it through because of the pain im in, they cant prescribe me any painkillers because the stronger stuff (tramadol, codeine etc) i have reactions too, and normal painkillers arnt touching it. Im hoping it wont be too long, but its only for a consultation rather than treatment so ill see what they say..
Blueberry.....Have you ever tried CBD oil for pain????? I take it in a spray form, i also take it in jelly tablet form and it helps somewhat-its better if it has THC within it, but you can only get that from Amsterdam i think with the THC, but i still take it without the THC..
For pain i use the oil and massage it into the pelvic area, then i use tiger balm for slightly stronger pain, for unbearable pain i use a hot water bottle, salt baths and a lot of CBD oil, for pain thats sending me over the edge i use raw cannibas.....DISCLAIMER.... its illegal cannibas-so i do not promote anyone to take it-as you will enter into a criminal situation if you do!!!!!!!!!! but if you live in the Durham area-apparently the police are supporting it somewhat!!!!!!!!!!!
Thanks to BRB who started off this discussion-by sharing her struggles, i pray and hope you get the help and support you need, do not give up, if you have to leave the country to get the help you need-then do it, if you have to sue-do it, do whatever you can to get your health sorted, i wish you the best and thanks for your support and words and sharing xxxxxxxx
Thank you Me-Amongst-Millions. I really do share your frustration and disbelief. It's astounding that so many of us are left dealing with ill health. I first saw a gynae and was told of all the complications of having a laparoscopy, but I was in horrendous pain on and for for 15 months so I said go ahead, I want to find out what's going on. It took another 15 months before I had the laparoscopy and when I got there, it was a different gynae performing it. I told him I had been on antibiotics on and off for 15 months and they worked whilst on them but symptoms came right back once off. He had a look and when I came round I was given the same lot of antibiotics and sent on my way, still left in pain, if not worse pain than before and told they would see me in 4 months time. Despite my GP writing to ask them to see me urgently, they never did. When I did go back after 4 months, I found out he had left and they said nothing more they can do and discharged me. I have since seen a gynae that doesn't believe I have an infection and his solution was to perform a hysterectomy but advised it may not cure things - absolutely crazy thinking. And 3 years on, symptoms progressively getting worse I have to try to self medicate with the help of my GP and I find it appalling. This website has been a great support in low times, knowing people have some great advice to give and making me feel like this is not all in my head like I'm led to believe. Now, when things get bad it pushes me to keep fighting for answers, what choice do we all have. But I agree, there are no many female specialists out there to deal specifically with these issues, my GP has struggled herself to find anyone.
I wonder if there is possibility that you all could come to the US for treatment. Our healthcare system isn't great either and it can be expensive, but at least you don't have to wait a year before getting treatment.
Right now I'm only on my second week of doxycycline. I still have urinary urgency, some occasional pelvic aching, a little pelvic swelling, and chills. So I am doing a lot better. I don't care if I feel 100% better within a week though--I am going to take the full two months of meds so I can wipe this out.
Bloods came back clear again so ive been told i need to wait to see Gynae, i havnt recieved a referral letter but it could he up to 16 weeks.. seriously fed up
BRB.........do a detox flush of your system, remove metals, remove sugar, remove toxins, have a colonic, do everything you can to eliminate everything, so you can say to them, ive done everything i can to remove pain, to eliminate the problems, then all they're left to deal with is the problem within the womb area. which sounds ridiculous yeah, but soon they may start saying that the problems might be coming from other parts of the body - which they tried to tell me one day, they also tried to tell me that maybe as a child i have a bad memory of something and thats whats causing my pain.......I obviously wanted to rugby tackle that DR that day and put it down to a childhood memory that caused me pain!!!!!!!!!!!!!!!!!!!!!
But doing all that detox will help pick you up...pamper yourself, join a gym if you can afford it - sit in the jacuzzi this helps pain, steam out your body in the steam room, swallow litres and litres of water whilst doing it....... try to pick yourself up from being fed up ok.... it doesn't cure your health going to the gym, but it helps as a distraction!!!!
start putting all the salts in your bath and lay in the bath for an hour or more, epsom, himalayan, magnesium.....you can buy these cheap from better buys, quality save, depending where you are in the country...... more expensive places will be boots,..
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