What is wrong with me? Constant pelvic pain and no known cause

[XCBXx]

Hi, i wondered if anyone had gone through anything similar and had found out what the issue was?

I’ve been having almost constant pelvic pain which then radiates round to my right hand side of my lower back since February. One day I was fine, the next extremely bloated and then constant pain. I’ve been to the Doctors so many times and if I’m honest they just fob me off. After a lot of pushing, after being originally told to wait and see if the pain disappears, I’ve had all bloods including hormones, CA125, CRP, ultrasounds, urinalysis, calprotectin test, colonoscopy and a bladder test which have all come back normal. The only thing they have found is some very small kidney stones but in my left kidney and they have said these would not be the cause of my pain. I’ve then spoken with a gynaecologist who has put me forward for a laparoscopy but said the wait is long and that they will likely find nothing, this was back in august. She did say that all they might find is a bit of scar tissue from my 2 previous c sections.

Just currently feeling very deflated and like I am no closer to finding out the cause. Some days the pain is worse than others, today is one of those days with my lower abdomen being tender to touch. It’s really affecting my day to day life and with it going on for so long, it does make me worry that it’s something serious.

just wondering if anyone has gone through anything similar and could offer some suggestions?!

Endometriosis is a possible cause of such pain and that is likely why the lap operation has been suggested. I used to get similar pain that radiated from my left hip towards both my stomach and back and in my case the cause was endometriosis.

If you have the financial means to see a gynae as a private patient I would do this as NHS waiting lists are miles long.

I am in the same situation as you. Onset was July, extreme bloating and pain around my hip, top of leg, lower back etc. My GP was amazing and booked me in for full bloods the next day including CA125. My CA125 came back slightly raised so I was referred for ultrasound on 2 week cancer pathway. Scan was clear, GP then referred me to gynaecology as I still have the pain. I had the appointment last week amd I've left clueless. The consultant was adamant my pain didn't suggest a gynae issue and sounded more like a bone issue!! I said it comes around my period then eases to which he replied oh it could be hormones and suggested I go on the pill 🙄 I felt completely fobbed off. I did get him to agree to requesting a repeat of my CA125 blood test so I'm now waiting on that.
He just kept saying the scan was clear and he doesn't think it's gynae related, endometriosis wasn't even mentioned as a possibility.

And155

You were fobbed off and I would seek a second opinion from a gynae not based at the hospital you visited. If you have the means to pay for an initial consultation with a gynae at a private hospital I would consider this.

I had those symptoms and in my case anyway the cause was endometriosis. (My top of legs pain was endo aggravating the sciatic nerve). Any pain that is cyclical in nature like yours is and or gets worse up to and including menses should be checked out to see if endometriosis is present.

The pill would dampen down the symptoms but would not in any way address the root cause.

Endometriosis is usually diagnosed via a keyhole surgery op called a laparoscopy.

What sort of scan did you have?. Scans do not readily detect endometriosis if it is present because those deposits are so very small. I've had more internal ultrasounds than I care to mention by now and NONE of them ever detected the vast amount of endometriosis present in my uterine cavity; only the laparoscopy type surgery I had did.

Look up Chronic Pelvic Pain Syndrome, it might be useful.
I've had all the tests, scans, exams etc, no answers. Coming up 2 years living with this and I've only just found out about CPPS, so still reading.

@And155 sorry to hear you are going through a similar sort of thing. Did you ever get to the bottom of it? Finally have a laparoscopy booked for 5 weeks time which I’m so nervous about but will also be happy to finally have some answers. Pain is still here, even radiates down my leg and bum cheeks when it’s bad. Had an abdominal ct, mainly because they found a small kidney stone, and urology said that was all clear so discharged me. Also had a small bowel mri to go with the colonoscopy and again all fine. At this point it’s just baffling how I can have this pain for this long and be none the wiser as to the cause xx

@AttilaTheMeerkat thank you for your reply! Finally got my laparoscopy appointment, 8 months after the initial consultation, unfortunately was unable to go privately but really wish I could of done. Did you ever have a lap operation? If so how was it? Very nervous. Despite having 2 c sections, the thought of a general anaesthetic makes me more nervous xx

@finnmcool thank you for your reply. Sorry to hear you’re going through the pain too. Have you found anything that’s eases it? Xx

It really does sound like endometriosis. I hope the laparoscopy brings you some relief from the pelvic pain

Hey @XCBXx how did you get on with the examination? You would exactly like me and pain is very similar. I've only jjst been referred

Hi @user1478182517, I was able to find out the cause of my pain. Unfortunately it is severe adhesions caused by my last c section. My uterus is attached to my abdominal wall encompassing my bladder. Unfortunately they said there is nothing that they can do about it without causing damage to my bladder or lots of blood loss so I’m just on pain management. She did say there is the option of a hysterectomy but that she would strongly advise against this due to how risky the operation would be. So unfortunately not great news. Hope you’re ok! X