Feeling fed up of the pain

[BlueRedBerry]

This is going yo be a long one so i honestly appologise!

Ive had constant dull pelvic pain for weeks. Its like a dull cramp that just does not go away. Along with this, im constantly running to the toilet and cannot empty my bowels properly as within 5 minutes im straight back to the toilet. Ive had urine tests 3 times (days apart) and everytime has showed white blood cells, but once sent to the lab, no infection present, so not a UTI or anything like that. Here is a full list of my symptopms:

- For months ive had pain when having sex, deep in my pelvis. This has been so bad i now physically cant have sex anymore as i tense up so much. Never used to have that issue, only started happening in the last 6 months. Every other symptom has developed in the last 2.

- Constantly needing to pee. This comes and goes, but at some points (i keep a ‘pee diary’) ive been at the toilet 23 times! Serious hindrance on my life. Also not being able to ‘fully pee’ and needing to run back 5 minutes later.

- Feeling generally tired, literally not being able to move for being so tired.

- Exteremely painful periods. I would scream out in pain, so much so i was taken to A&E with suspected appendicitis it was so painful. This was then controlled with the pill, and then the monthly injection when i became sexually active. I came of this 1 year ago in hope to become pregnant and have never had a period since, but i still get the cramps that i used to have, just no bleeding at all. After being told it can be months even years after stopping he injection before my periods come back, i started taking the pill again to try get them going again, 4 months of taking it and still no periods (on the 1 week break)

- Constant dull ache, like the type of dull ache you get when your on your period. Sometimes gets quite severe and can cause pain in my hips and back.

- Nausea, this happens from time to time when the full ache gets really bad. Because of this, im seriously losing my appetite.

I saw my GP, who done an internal exam (or tried to, it was so painful that she couldnt, probably from me tensing) and took urine and swabs, all normal. Referred me for an ultrasound, again, normal. What the hell do i do now? I feel like shes thinking im making it up, and i cant seem to find anything that puts me at ease or any kind of definitive answer. As far as im aware they havent arranged a follow up and they dont know what to do next, so what do i do now? Anyone had any similar experiences and what happened?

[Joridley]

There is clearly something going in have you had a mri scan? If not it may be wirth gaving one.

[BlueRedBerry in reply to Joridley]

No i havnt, unfortunately i cant just request one either i need to be referred for it. Will discuss in the morning

[Joridley in reply to BlueRedBerry]

Mri scans tend to give a much better pucture if what is going on than ultra sounds. Hooe you get sorted.

[Lulububs]

Wow i had all these symptoms for years and years had every test goin in end i went to a osteopath and it turned out i had two herniated disc in my lower back(never had back pain?)

They were trapping nerves that was making me poo and wee alot and i had a dull ache in groin never stopped it made me feel sick.

It mayb worth seeing one?

It also could b u had endometriosis but u need to have a laparoscopy for that. Rarely shows on any other test

[BlueRedBerry in reply to Lulububs]

Wow, im glad you got things sorted! What tests did you have done? Ive been to the walk in tonight as the pain peaked and was really bad. Ive had several urine tests, white blood cells present every time but no infection, so theyre a tad confused by that. Back at the doctors in the morning to see what next steps can be taken

[Lulububs in reply to BlueRedBerry]

Ive had a colonoscopy, sigmoidoscopy, mri, cts, ultrasounds, and two laparoscopies.

Nothing found in any of them.

Every time they took bloods there was high white count which means inflammation in the body!

Which mine was obv coz i was in agony!

Noone even thought back ?

I was in pain in my groin so they thought organs?

I ended up goin to osteo for totally diff reason of being stressed and wanting a massage and b relaxed and when i sat and told him everything then he felt my back he said “ do u know ur l5-s1 is out “ u need mri asap, he wrote to my dr and my dr said “ no it not that” so i insisted and what do u know he was right doctor was wrong!!!

[BlueRedBerry in reply to Lulububs]

Oh wow! Its nice to know that all your tests for gynae reasons cam back normal and you still got a diagnosis. I hope they can find the reasons behind all my symptoms!

[Lulububs in reply to BlueRedBerry]

Have u thought about seeing a women physio or if it could b something else?

My periods were horrific like faint, roll around on floor , puke bad for 16 years ....

But after the osteo and i also used to get ibs symptoms which again i put down to suspected endo and i decided to give up imflammaatory food... ie gluten, to much dairy, processed foods and that REALLY REALLY HELPED!

Thats another thing that can effect periods and b the same as endo related symptoms.

There so many things that are the same and can b misdiagnosed u just have to eliminate it till u find what it is

[Kittykat1234 in reply to BlueRedBerry]

I’ve been having the same problem! I have urinary tract infection like symptoms and when they take a urine sample they see white blood cells but there’s not infection when they sent it off to the lab. So frustrating! I’m currently having some other testing done to see if there’s anything going on with my kidneys. Good luck to you! Your not alone

[BlueRedBerry in reply to Kittykat1234]

Let me know how you get on! X

[Konagirl60]

Where do you live?

[BlueRedBerry in reply to Konagirl60]

North East England

[Konagirl60]

You haven’t mentioned your age. If you’re young and of menstrual age, your symptoms are definitely not normal. You should be having periods. They are natural.

When you say having intercourse hurts, can you describe the pain? Are you unable to relax and become lubricated? OR when your partner enters you does that cause pain ? OR when it gets towards climax can your body relax and have an orgasm ?

You must describe the sensation. Tingling? Cutting? Spasming? Burning? Electrocuted?

A urologist might be able to rule out cystitis. Maybe a nerve is pinched and that is affecting bladder function?

Have you had a colonoscopy?

A good probiotic may get settle any gut issues along with a vegetarian/ Mediterranean diet. Aloe Vera juice helps comstipation. Eggplant fibre really cleans the bowels. Perhaps a Naturopath might help?

I agree an MRI should be done to.

Finally, you do have to rule out endometriosis. Perhaps you need to see a female gynaecologist.

I feel your stress. Pascoflaire is a German made natural anti anxiety....it’s works. It’s made with Passion flowers. I find mine at health food stores.

[BlueRedBerry in reply to Konagirl60]

Hello, im 24. It hurts deep, during and after, like a ache. Cycstitis has been ruled out as no infection is or has been present. Waiting on a Gynae referral but have been warned this could be a while which is a slap to the face considering how ongoing this has been on how much pain i am in. They cannot give me painkillers as the only thing they are aloud to give for this type of pain is Codeine which i have reactions to. I have been back to the doctors today who want to do a blood test, previous one 3 weeks ago was normal so i doubt this one will show anything.

[Konagirl60 in reply to BlueRedBerry]

If you don’t get anywhere with doctors, can you hire a registered nurse consultant? My own saved my life when all doctors did was prescribe medications and sedated me. I needed surgery and my nurse advocated for me. Don’t give up...I can tell...you’re stuck and not getting anywhere. It isn’t healthy for your cognitive function to have ongoing pain. You must be anxious. Try the Pascoflaire.

[BlueRedBerry in reply to Konagirl60]

I cant afford to go private unfortunately, its not something i can manage at the moment, im only just affording the prescriptions for antibiotics that they keep prescribing me by ‘chance’ it might be an infection. Quite frankly, i dont think they have a clue what to do. Its now the weekend, and all my doctor has said is ‘if it gets worse go to A&E, if it stays the same come back on Monday and we will do blood tests’ so now im left the weekend with no pain relief and back to square one. No mention of rushing through my referral to Gynae, nothing. They cant even prescribe me anything, there was talk of Tramadol but theyre worried as ive had reactions to Codeine before, so they fear Tramadol could cause similar reactions. Im lost as to where to go. No doubt ill go for the blood tests and they will most likely be normal like the urine tests.

[Katieeee in reply to BlueRedBerry]

I really feel for you as feel like we are in the same boat! Terrible pelvic pain/back pain/hip pain/leg pain/groin pain. Constantly in doctors! Been to A&E twice with pain! Constantly having antibiotics thrown at me to no affect. Bloods fine, urine fine (sometimes slight trace of blood, only once shown white blood cells). Had numerous internal ultrasounds and all but one was completely normal and even the last one is ‘normal most of the time’ - small amount of free fluid found in pelvis which signals inflammation somewhere. Currently waiting for 4th lot of swabs to comeback - apparently checking for more things. Also waiting for gynae appointment. I’m on naproxen for pain relief. Currently not in work but will need to return very soon. Also spent SO much money on perscriptions!!

[BlueRedBerry in reply to Katieeee]

Im happy but yet sad to know im not alone i hope we BOTH get some closure! Im dreading now suffering the weekend as i did last week and several weeks before that, but this pain just seems to be getting worse if im honest, either that or my tolerance to it is serious dropping. I just want to feel okay again, or atleast know whats wrong so i can manage it!

[Katieeee in reply to BlueRedBerry]

Me too. It’s like a nightmare we can’t escape and I miss my life before!! I have a low grade fever on and off so they are suspecting PID for me (Pelvic inflammatory disease) due to complications following a pregnancy loss BUT I’ve already had two weeks of antibiotics for this and it’s had no impact. At one point on Monday they were going to admit me, from A&E, but then there were no beds so just did swabs and booked gynae appointment which I’ve still not heard about. I’ve totally had to self direct and constantly push my own care. I’m exhausted by it all

[BlueRedBerry in reply to Katieeee]

Bless you, it sounds like your having a sh*t time. Im also having a huge issue with ‘back acne’ at the moment so im covered in large spots and boils which is making it uncomfortable to lie down, on top of the fact of all the above happening. I am well and truly fed up, it is just one thing after another. I have a huge cyst that keeps flaring up, but dont want to mention it for fear of being ‘a hypochondriac’. Ive always had a terrible immune system to be fair, as soon as one thing happens, everything hits me at once! I just want to feel ‘normal’ again, but i feel like thats asking to much by the fact im just waiting around for some kind of miraculous solution. Keep me updated on how your getting on,

I hope we can both have some closure!

[Konagirl60 in reply to BlueRedBerry]

Ladies, buy some fresh ginger and make a tea with it. Add any remaining ginger to a container of water in the fridge. Ginger helps pain.

Curcumin helps pain to. Try it.

Pineapple contains an enzyme that helps pain...buy fresh and cut up for snacks throughout the day.

Beets lower blood pressure.

I’m so sorry you feel so stuck.....don’t give up.

[Konagirl60 in reply to BlueRedBerry]

Too many antibiotics will destroy your microbiome....eat plain yogurt or take a probiotic.

[Katieeee in reply to Konagirl60]

Agreed! Sometimes wonder if it’s made my situation worse!

[Konagirl60 in reply to Katieeee]

Antibiotics taken too frequently are not healthy BECAUSE they kill normal flora in your gut as well.

[DM14]

Hello everyone I wanted to get involved in the chat as I am definitely in the same boat as you all...

Katieeee i was recently diagnosed with PID in December when I got taking into a&e and was given four types of antibiotics.

I have had gynae/gastro issues for ears and have a few diagnosis of things but nothing that has identified my main problem.... YET

Since December the antibiotics eased it up a little bit not fully and now I have had new symptoms so they have put me back on antibiotics today after they checked my urine and said I had a ‘bacterial infection’

I’m on the list to see a gynaecologist and waiting to get some REAL ANSWERS!

I’m always happy to chat, even privately if you like I find comfort in people being in my situation BlueRedBerry xxx

[BlueRedBerry in reply to DM14]

Its unfortunate how many of us are in the same boat! I hope we can all get some answers!

[Katieeee in reply to DM14]

Hello! Thanks so much for this! Also on wait to see gynaecologist. I’m praying they find some type of bacteria next week in my fourth lot of swabs but honestly, knowing my luck, they won’t!! I’ve only had two antibiotics at the moment for PID. Had antibiotics for kidney infection that I didn’t have the week before though! So all this antibiotic use has given me terrible thrush which I can’t shake! I think I’d be really anxious to take more antibiotics without a very clear reason now x

[Konagirl60 in reply to Katieeee]

Start taking a pre and probiotic. Your normal gut flora have been killed by antibiotics. Eat thick plain Greek yogurt.

Eat lean and green.

[Katieeee in reply to DM14]

Out of interest, do you have a low grade fever? I do! Which is another reason they think PID!

[DM14 in reply to Katieeee]

Yes I always have a fever or high temperature... it just fluctuates with my pain x

[DM14 in reply to Katieeee]

Also a lot of people have seemed to struggle to get a diagnosis of PID but it wasn’t even on my radar... I went into a&e and he diagnosed it there and then.

Um my swab tests for any STD came back negative so the next step is to figure out my cause x

[Katieeee in reply to DM14]

They just seem to be saying it is PID but then go on to say I should have responded to the antibiotics 🤷🏼‍♀️🤷🏼‍♀️

[Konagirl60 in reply to Katieeee]

How could an antibiotic ( meant to kill pathogenic bacteria ) help inflammation?

You should try curcumin, and eat anti inflammatory foods.

[Katieeee in reply to Konagirl60]

Because if it’s PID it’s bacterial.

[Konagirl60 in reply to Katieeee]

Oh..what bacteria cause it? Wow...I dont have this so I had no clue. Sorry if I confused you.

[Katieeee in reply to Konagirl60]

That’s what thy haven’t figured out yet. Hence why I’m not having any more ‘blind’ antibiotics in a trial and error process until they do. Awaiting results of yet more swabs

[Konagirl60 in reply to Katieeee]

Have they ruled out all STD’s ?

[Katieeee in reply to Konagirl60]

Yep and been with partner for 16 years!

[Luvpups]

Hi there I’m Dawn!

Please do not give up trying to get a diagnosis ask your gynecologist to refer you to a urologist/gynecologist from there they will run their own tests and likely send you to a pelvic pain specialist...and most likely to a pain management dr. I too had these same symptoms the sooner you get a diagnosis the sooner you will receive treatment!!!!

Stay Strong you will get answers!

[DM14 in reply to Luvpups]

What is a urologist?

Have you been diagnosed with anything?x

[Debra13 in reply to DM14]

Hello

A urologist deals with the kidneys and the bladder. Probably best to see a urogynecologist. They treat pelvic problems related to the bladder. I see one for interstitial cystitis and I get procedures from her she also treats my Pudendal neuralgia as well. I do see other specialists for my Pudendal neuralgia though. Hope that helps. God bless Deb.

[Konagirl60 in reply to Debra13]

Debra, what treatment does your uro-gynaecologist do to you to help your pudendal neuralgia?

Also, what do the other pain specialists do to help you?

[Debra13 in reply to Konagirl60]

My urogynecologist every 3 months gives me amniotic shots and botox shots. I also get 2 nerve blocks a month minus the steroids. Plus the medication I take. But basically I do a lot of things for myself to help with the pain. I’ve learned over the years what flares me up and what helps to bring the pain down. But sometimes nothing helps at all. NOTHING 😩 lots of positive thoughts. Deb

[Konagirl60 in reply to Debra13]

Curcumin really helps me especially in winter...colder weather aggravates my injured nerve.

[Debra13 in reply to Konagirl60]

It’s funny you say that because usually I do better in the colder months but not this time. I can only help it’s going it the reverse now and I’ll do better in the warmer months. Thank you. What is curcumin. Sorry I’m not familiar with it. Deb

[Konagirl60 in reply to Debra13]

It’s the component of turmeric that when we ingest it, heats up our blood and thus our entire body. I am menopausal and only rarely do I sweat because of the turmeric induced heat. If Im working out in the morning ( which is rare ) I do but the other parts of the day I am fine. I do not use hormone therapy at all. It’s a great anti-inflammatory. We try to eat curries with extra turmeric twice a week.

[Debra13 in reply to Konagirl60]

I’m in menopause and on hormone therapy. I suffer very badly from hot flashes and yes I take turmeric daily and I now remember where I saw the word on my bottle. Unfortunately it doesn’t help my symptoms of menopause. I wish it did. Thank you. Deb

[Konagirl60 in reply to Debra13]

I suggested curcumin as a pain modulator. I’m sorry you have more intense menopausal symptoms.

[Aphra]

Hi, I had similar symptoms and was diagnosed with endometriosis following a laparoscopy at the beginning of February. I was very worried that I could have PID due to having some urine symptoms (always felt like I needed to go and often went every hour or so; I had previously been to the doctor repeatedly thinking I had a UTI, only for no infection to be detected but white blood cells were always found in my urine). I also had some bowel symptoms (I would go approximately 3 times a day and would have pain beforehand and sometimes during) which I’ve now found out were because I had an adhesion linking my bowel to my abdominal wall.

I do think you need to see a gynae ASAP. They should do an ultrasound and then a laparoscopy - nothing showed on the ultrasound but during the laparoscopy they removed endo deposits on my pelvic walls and in my pouch of Douglas - this is a really common place for endo and can cause pain during sex, which I had. Laparoscopy can also tell decisively if you have PID. I am 24 so was worried they’d think it was PID as before I got a referral I was just getting bounced between my GP and sexual health services, but the consultants told me if I had no history of invasive procedures like D&C, no low grade fevers, no nausea, clear swabs and no recent changes of sexual partner then it was very unlikely.

[BlueRedBerry in reply to Aphra]

Bless you! Im so glad you got a definitive answer to your issues, i long for the same! When did you start having issues and what tests were done? How long did it take from going to the doctors to getting diagonosed? I raised the concerns before Christmas, been suffering ever since. I have had 3 urine tests, always showed white blood cells but yet no infection, blood tests that came back normal, ultrasound like i said was normal, and now they are just fobbing me off i feel by saying well ultrasound was normal so we will do more blood tests. Like come on! Ive been to the doctors this week twice for the pain and then the walk on too as i was doubled over in agony, nothing obvious so sent home. Vicious cycle of getting nowhere at the moment

[Aphra in reply to BlueRedBerry]

Hi, some of the symptoms I'd had for years - the bladder issues started in 2015, and I'd had some mild pain outside my period since puberty. My pain never got really extreme but was intermittent, nagging, and occasionally much more severe (for the last year or so I would have flare ups where I had a feeling like someone had stuck a spike through my pelvis and would struggle to walk; these, and the rest of my pain, did not correlate with my period). I'd also had pain during sex since I first became sexually active at 16, but as this wasn't constant I attributed it to me not being aroused enough etc. That was the one big symptom that the gynaecologist I saw thought indicated endometriosis, and he was right - I've always had some pain with periods but nothing extreme, except for a few rare occasions, so I'd though endometriosis was unlikely but this is a misconception as you can have endometriosis and have totally normal (or even light) periods.

I first went to the GP and was referred due to bleeding after sex and in between periods. This was due to a cervical ectropion, which was treated using cryocautery. I also had an ultrasound to make sure nothing else was going on - this was clear - and a smear test. I'd also previously had multiple sexual health screenings where nothing except white blood cells was found. While I was with the gynaecologist I mentioned the pain I was having outside of my period and during sex and he suggested it could be endometriosis, but as I was being treated for an ectropion I would need to be referred back. As instructed, I waited a few months and was still having issues, so I went to my GP who said it sounded like endometriosis and referred me back to the hospital. Within minutes of meeting the senior consultant he suggested endometriosis and a laparoscopy. That was in mid January and I had my laparoscopy on 7th February, so I had about a 3 week wait. The whole process took well over a year, and I'm really glad I persisted - I was fobbed off by a few GPs (including one who told me that some women just have pelvic pain!!) and the one who referred me a second time was fairly horrified that doctors kept suggesting STI screenings even though I was adamant that wasn't the issue as I'd had clear test results and have been with my partner for six years!

I'm really sorry you've not been taken seriously - I can't understand why women who are going to A&E in pain are treated so poorly, and have their symptoms so minimised If you can, do try and get a referral to see a gynaecologist - it does sound to me like it's gynaecological, and even if it isn't at least that's been thoroughly ruled out! Obviously I'm not a doctor and can't diagnose you but I wouldn't be surprised if it was endometriosis - I constantly felt like my bladder was irritated and thought maybe I had interstitial cystitis, but over the past week since my endo was treated my bladder has felt fine, which has made me realise quite how bad things were before! Endometriosis causes a lot of inflammation, which I suspect may have resulted in the white blood cells that were detected in my urine and my vaginal/cervical swabs, so that's something to bear in mind.

If you think that your GP isn't taking you seriously do request to see another GP, as having an understanding GP who is willing to refer you can make all the difference. Good luck and I really hope you get this sorted! X

[introuble]

Could it be Endometriosis?

[Nikki1974]

Seems there are a few of us suffering with the same symptoms but struggling with a firm diagnosis. I first went into a & e 3 years ago with awful pelvic, back pain, copious amounts of discharge, fever, feeling sick, deep pain inside during sex, massively bloated stomach and was told it was suspected PID. I was sent on my way with antibiotics and the pain lessened but never went fully away, a month or so later and it flared badly again and i was just given more antibiotics. All swabs would always come back clear. 18 months later i had a laparoscopy and was found to have tons of fluid in my pelvis, was again sent on my way with more antibiotics, the swabs again came back clear. This has been the cycle for the last 3 years, however ive never gone back into hospital, just been given antibiotics from GP. No one can work out what is going on. Im also struggling with UTIs but they are not the cause of the PID. So frustrating and disheartening. My gynae has shut down my hormones and put me into menopause to see if the pain eases as he keeps telling me i cannot possibly have PID for that long which is nonsense. The pain has not lessened either. I know my body and i know im fighting an infection. The only thing that takes away the pain, bloating and all other symptoms is the antibiotic metronidazole. I eat well, take high strength probiotics, i am at a loss as to what is going on. I hope we all get some answers soon.

[introuble in reply to Nikki1974]

Thanks for sharing Nikki, always looking forward for your updates... hugsx

I hope you will feel better one day ❤️

[Nikki1974 in reply to introuble]

Thank you introuble, hopefully, sometime soon someone will crack this for us! Best wishes to you too x

[BlueRedBerry]

UPDATE

Booked for ANOTHER ultrsound. They tried more bloods yesterday but after jabbing me 6 times and not being able to get a vein from my arm, wrisf, hand etc they gave up. Scan for Monday, hopefully just a normal one but may have to resort to a trans vaginal which im dreading as i hate the idea of someone being in that area something you get used to after having these issues for a while i suppose! Any advice? :/