Constant Pelvic Pain

[chlooe]

Hi everyone - hope you are all well...

Just here looking for some advice really. I'm new here and not sure who else to talk to or where else to go...

Since March this year I have been suffering from constant chronic pelvic pain, most days it is a dull ache, some days it can get worse. To me, it feels like I have period pains all the time.

At first, they thought I had a UTI and after running some tests including bloods and urinalysis it came back negative however as a precaution beforehand I was put on some UTI antibiotics.

After this I went back to my GP as I was still having this pelvic pain, and they thought I had Pelvic Inflammatory Disease. I was put on Doxycyclin and Metrodizonale for 2 weeks.

The pain continued, so my GP did a pelvic exam and some swabs which all came back clear, so he thought I may have an ovarian cyst.

At this point the pain was really bad so I went into hospital overnight and they conducted an ultrasound on my pelvis/ovaries and that came back normal - with no cysts.

So they said I was constipated, although they ran no bowel tests and gave me some Movical, which I now take regularly.

Even after completing my constipation treatment and having regular bowel movements, I am still experiencing this horrible pelvic pain.

My GP now thinks it isn't bowel related and has sent me to see a Gynaecologist....however I am moving abroad in August and won't be here for my appointment so may need to have the consultation done privately and see what they say before we move as if something is wrong maybe it is best we stay as I wouldn't be able to afford private treatment here or abroad....

I'm really worried about my fertility and upset in case something is seriously wrong

I had to go to A + E yesterday as I was in lots of pain. After doing my bloods and a urine test, they couldn't find anything wrong except my white blood cell count was raised which to them indicated an inflammation (and some protein was raised too, which also indicated that - but I can't remember the name) so they gave me some more antibiotics, the same which I had for PID.

They did mention Endometriosis, but they aren't sure as I don't get painful periods, no pain during sex and the ultrasound was fine - actually the doctor said it was 'quite unremarkable' as there was nothing indicating anything wrong.

I was just wondering if anyone has any advice or has experienced anything similar? I am so lost and confused......and fed up with this constant pain!

Thank you

Chloe

[Cardinal]

You need to see a gynecologist who specializes in pelvic pain and other abnormal issues and also see a pelvic physiotherapist so she can do a thorough internal exam to see if you might have overly tight pelvic floor muscles. Then you will have much more info. A GP won't know anything.

[Katinldn]

Hi there, sorry to hear you are having g such a tough time. Have you ever heard of interstitial cystitis? It's an inflammatory disease that can effect your bladder. You get all of the symptoms of a uti but usually without the actual infection. They don't yet know whether suffers do have an infection but the bacteria is so low that it doesn't register on a normal dip test or as it is classed as an auto immune problem that the bladder starts to spasm resulting in the same uti symptoms. In my case a low dose of antibiotics does settle it down but when I was first diagnosed and at my worst I had horrendous pelvic pain (a constant dull ache that ran around my pelvis and back) and could go to the toilet up to fifty times a day. It's not an easy one to diagnose or treat so you would need to see a urologist but once managed you can resume a normal life. I also suffered with endo and pid but the symptoms to those had much more of a definite pattern (symptoms worse around periods, painful sex, fever and extreme pain with pid) whereas when my bladder issue started I was like you, had all the signs of a uti but kept testing negative for infection. Hope you get the answers and treatment that you need xxx

[chlooe in reply to Katinldn]

Hi Kaitnldn,

I was diagnosed with Overactive Bladder last year but that's calmed down now as I am not drinking so much coffee or irritants to my bladder.

I'm not weeing as much anymore, used to be going to the toilet quite a bit but now it's 2/3 x a day...can you have IC without going to the toilet a lot?

The bizarre thing is I don't have painful periods or pain with sex so I am just so confused to what this could be...

Thank you

Chloe

[Katinldn in reply to chlooe]

Hi Chloe, as far as I am aware it is possible for sufferers to have IC without frequency and urgency but just have the pain.

Now mine is managed I only get the urgency when I have a really bad flare up but when I am run down I do still get the pain and pressure feeling.

As you have already been diagnosed with an overactive bladder it may be worth mentioning IC as the two can be closely related xxx

[Hidden]

Do you have burning on passing urine. Did they send the urine specimen to the lab to check for infection or just do the urinalysis?

I would ask your GP to send a specimen of your urine to the lab at the hospital for culture and sensitivity test to check again for urine infection and if there is an infection the lab will suggest which anti-biotic is best to treat that infection.

Also ask your GP to repeat the vaginal swab test again to check for infection.

It is advisable to have a Cervical Smear test at the same time.

Is your menstruation normal?

I seems like you have some sort of infection which needs to be dealt with more urgently.

Ask your GP to make an urgent appointment with your Gynaecologist for you or see if there is an emergency gynaecology clinic provided by your local hospital.

Your GP should have this information or you can phone your local hospital or ask the hospital telephone operator for the extension number for the emergency gynaecology clinic if there is one.

I don't know if your GP has to notify them that you are coming or you just walk in as you would do if you were going to A&E.

All the best I hope you get sorted out before you move if not I am sure where ever you move to will continue with the investigations. Although for the urine test and vaginal swab test to check for infection again is something that you could be doing in the mean-time.

[chlooe in reply to Hidden]

Hi cvbn,

Thanks for your reply.

Yeah - all the results from the lab came back clear, they just said my white blood cell count was a little high.

My menstruation is always normal. This is what I find so confusing

I think I will have some more swabs done at the GUM clinic just in case but my last tests came back clear in April....

I just can't figure out what is causing this constant pain!

Thanks

Chloe

[chlooe in reply to chlooe]

Sorry- also meant to say no pain when passing urine as well!

[Hidden]

hello Chloe,your saga seems the same as mine,.i have had chronic pelvic pain(bone?)andcswelling for about 4 years.initially from gp i got "i am not having anything to do with your stomach" and a suggestion was PID but no confirmation,.mine is getting progressively worse and disabling,like you scans are said to "be normal" so get dismissed now as "nothing wrong".tell gp its not "nothing wrong" but not diagnosed,i recently had white cells in my urine-have had several urine infections over time-but not considered why have so many.i wish you good luck and get an answer soon

[chlooe in reply to Hidden]

Hi dolphin33

Sounds exactly like my issue! Did you get any diagnosis?

Thanks

Chloe

[Hidden in reply to chlooe]

Hi Chloe

no not as yet still battling with gp's to take me seriously and not persist in assuming its "all in my head".ive told them numerous times i cant pass urine or it doesn t flow normally,to no avail,they only consider urine test results not my physical symptoms.

[Joolibee]

Hi chlooe. My problem started in a similar way to yours. I had various diagnoses, including urethral syndrome, vulvodynia and pudendal neuralgia. All of these conditions can be linked to over tight pelvic floor muscles; therefore, I would agree that a pelvic pain specialist and in particular a pelvic floor physiotherapist would probably be a good starting point. If you check on the pudendalhope website, there is a list of doctors and physios throughout the world (not very many though). You could also check out womens physiotherapists and ask them if they have experience in dealing with this kind of pain. Good luck.

[chlooe in reply to Joolibee]

Hi Joolibee,

Do you know of any pelvic floor exercises I can do in the meantime?

Thanks

Chloe

[Joolibee in reply to chlooe]

Hi chlooe. You could check out Amy Stein's book, 'Heal Pelvic Pain'. She is probably the main PT who highlighted the link with tight muscles and she suggests a number of exercises and management techniques. I think you could get the book on Amazon. She also has a DVD that was available on the IC network website. There are other books, such as A headache in the pelvis (Wise, Anderson). I could go on, as I've read so much over the years, but in my opinion, Amy Stein is a good place to start. Good luck.

[Cheryl37]

Could you be more specific on where you pain is located? Is it spread throughout your entire lower abdomen or just on one side and if so which side? Also, does it extend at all into your inner thigh, back or anywhere else?

[chlooe in reply to Cheryl37]

Hi Cheryl37,

Thanks for replying!

I can feel the pain all around the pelvis exactly where period pains are- by the pubic bone (like where underwear goes) down both sides of my groin and sometimes at the top of my thighs. All of this is on both sides and it goes from a constant dull ache to worse pain at certain times but I haven't identified any triggers etc. so not sure what it can be or what to do

Thank you

Chloe

[Hidden in reply to chlooe]

mine is just around my pubic bone and its been persistent from the start .i have swelling also?do you have swelling?

[chlooe in reply to Hidden]

It feels really tender and swollen, like my whole pelvis feels so delicate and swollen but I can't physically see any swelling. How are you feeling today?

[Hidden in reply to chlooe]

hi Chlooe

had two sleepless nights cos of lower back pain as well as pelvic.called NHS111 advised to "see a dr" at local infirmary,came away with "take ibruprofen alongside paracetemol".always dubious about taking too many painkillers.

headpain and swelling(of skull??-maybe fluid??)also persistent-totally ignored by gp on wednesday -ranting on about everything being "severe psychological"issues,

fuming at being labelled as such -thats their answer for everything-and being told "you have nothing wrong-so why are they prescribing me meds for "things i do not have??!! and been declared unfit for work since 1998??

suddenly since 2012 when things got worse and no answers-a change of gps and suddenly i dont have any of what ive been diagnosed with.visible signs are invisible to gp and what they cant see and i complain of -i am not believed.

a dr who diagnosed two of my conditions 18 months ago has suddenly decided i dont have anything wrong.

[chlooe in reply to Hidden]

Hi Dolphin

Gosh sounds awful hope you are feeling a bit better.

This must be so frustrating for you - can you change GPs?

Chloe

[Hidden in reply to chlooe]

yes a bit back pain has eased but still have tightness in neck and huge abdomen which is reason for weight gain which gp refuses to acknowledge/believe me.classed it as "bloating" but not that its persistent,sore and lumpy and in next breath saying i am obese.if i were obese i would be fat all over.its only my abdomen-rest of me is a "normal" size 12/14.

trying to get back with my previous gp i was with for 10 years and knew me very well.new drs dont and prejudge me.

[Jaskirat in reply to chlooe]

Hi Chloe, I have the exact same symptoms! Period pains (but 24/7) and sometimes the pain goes down my upper thighs. I went though such a long process and found a specialist in endometriosis. They found some and cut it out but the pain is still here and now I can't even move around without painful repercussions. I went to see a bowel specialist this week and he Saud my endometriosis was not that bad so the pain is made up in my head......it is honestly the hardest thing to hear though my gynaecologist has said I do have a problem just unsure as to what it is. Plus only I can low how much pain I'm in so after crying and doubting I am going back to give that doc a piece of my mind. Nothing like a male doc telling you that you're not in pain when your on the sofa/bed all the time due to pain! I just wanted to say I feel your pain and that your post makes me feel less alone. I hope we all get better somehow. I've not yet found anything that helps except for lying Stoll. Hope I haven't scared you!! Lots of hugs

Jas.

[Jaskirat in reply to chlooe]

Hi Chloe, I have the exact same symptoms! Period pains (but 24/7) and sometimes the pain goes down my upper thighs. I went though such a long process and found a specialist in endometriosis. They found some and cut it out but the pain is still here and now I can't even move around without painful repercussions. I went to see a bowel specialist this week and he Saud my endometriosis was not that bad so the pain is made up in my head......it is honestly the hardest thing to hear though my gynaecologist has said I do have a problem just unsure as to what it is. Plus only I can low how much pain I'm in so after crying and doubting I am going back to give that doc a piece of my mind. Nothing like a male doc telling you that you're not in pain when your on the sofa/bed all the time due to pain! I just wanted to say I feel your pain and that your post makes me feel less alone. I hope we all get better somehow. I've not yet found anything that helps except for lying Stoll. Hope I haven't scared you!! Lots of hugs

Jas

[AnnaB1979]

I know you're already getting heaps of advice but my story may help to push for an answer. I suffered from debilitating pelvic pain amongst other things for years and as an example, in 2015, despite no or minimal signs of a UTI, I was given 15 courses of antibiotics thorough out the year as a precaution and sent home...in agony. Scans and blood tests were clear, my periods were sore but not agony, bleeding was unpleasant but not crazy but it was only when I paid to see a gynae privately did she do an internal exam which she said seemed to suggest endometriosis but That a laparoscopy could confirm it. I was in so much pain I thought I might as well try. Long story short, I was covered in endometriosis and it has left deep scars. It was treated and now it's being managed. But my god did I have to push for that diagnosis... Don't let them rule it out yet...

[chlooe in reply to AnnaB1979]

Hi Anna,

This sounds exactly like me...nothing is showing up on my scans...

Did the NHS help or did you get all the treatment done privately? I can't really afford to pay privately so will have to wait until my NHS consultation in either Sep or October, and none of these painkillers are working

Did you have pelvic pain all the time?

Thanks

Chloe

[AnnaB1979 in reply to chlooe]

The consultant I found also had an NHS surgery so I paid for the private consultation (£145) and was lucky enough to have private health cover through work but she also did NHS so she said people often paid to see her privately for the first appointment then she'd refer them to her NHS practise for the operation. Stupid system, I know. I had pain about 80% of the month and it was pretty random so no one ever suspected endometriosis. By the way, ibuprofen with codeine from over the counter at boots was good for quick relief sometimes but tramadol from the doctor was the best with nefopam. Keep us updated on how you get on. Xx

[Laurapaura]

Hi I'm glad you posted this as I'm in agonising pain months ago I was diagnosed with pid due to infection with the copper coil and was giving three courses of antibiotics which haven't worked and my pelvic pain is excruciating . For some reason I feel like I might have a fractured pelvis that's how it feels

[chlooe in reply to Laurapaura]

That's exactly how I feel! How are you feeling today?

[Laurapaura in reply to chlooe]

Well I'm literally just of the phone with the doctor I wanted an emergency app but instead the doctor is just making out a prescription for different kind of iboubrufen and some codeine painkillers and has told me to go to treatment room and take a urine sample and a swab. He said the pain should go away ina few days. I doubt that!! :0

[Dillyx]

Hi chlooe,

The pains do sound a lot like pelvic inflammatory disease, but usually they'd try to find one or two other relating symptoms of that before diagnosing it as it can be very difficult to diagnose. I have a friend with Endometriosis and her complaints are similar to yours. It's definitely worth seeing the specialist because like you said, if fertility turns out to be at risk (hopefully not!) it's best to knock whatever this is on the head now xxx