Something else?

[Kate345]

Hi guys.

So the past 3 months I've been in and out of Drs / a&e with pelvic pain and ovary area pain. I've had blood tests so many! A CT scan and a pelvic ultrasound. My CT showed ovary fluid however that has now gone on the ultrasound and my nurse said fluid can be normal and come and go in the cycle. My pelvic ultrasound was normal, my bloods are normal.. so I'm just lost.

I still have lower right back pain which goes in to my hips it goes in to my legs and the pain comes in waves and seems worse at difffent times of the day

I see a bladder specialist down Harley st in regards to a chronic bladder infection in my bladder walls caused by untreated cystitis from the NHS. So now I have a biofilm bladder infection. That can cause pain and inflammation however the pain I feel does feel like inflammation but feels different.

I went back to my GP and he's just scratching his head still.. they are sending me to a gyno and they don't know what else to do. My gp said he didn't want me to have a laparoscopy.

I also noticed I'm gassy, bloated too. Could this be something silly like IBS?

I'm aware I'll be in pain with my bladder thing but I want to know it is just that.

I've had pelvic inflammatory suggested to me too.. I've booked myself in for some swabs as well

My anxiety is really bad right now from worrying and I swear it's making it all worse.

[VW17]

I was diagnosed with IBS around 2009. Was having severe stomach cramps. Swelling. Vomiting until blood and acid were all that was coming. Diagnosed with IBS with wheat intolerance. Cutting wheat caused more severe pain if I inadvertently had any. Reintroduced and careful with what i eat but stress aggravates my stomach. Ibrupofen is awful for stomachs like mine...its a constant problem.

[Kate345 in reply to VW17]

I don't really notice stomach cramps just sometimes after ivd eaten. I've always had big stools lol and I'm only tiny and 5ft 2 haha.. so I do get constipated oftern. I've had IBS suggested before to me and my GP put me on Mint tablet things for a short period but it turned out most of that pain was my bladder issue however I know I do have slight issues with mj bowels. Just feel like a broken woman at the moment and the anxiety certainly isn't helping.

[VW17 in reply to Kate345]

Stomach cramps. Constipation. Diarrhoea. All symptoms of IBS. Also symptoms of stress. For me it's a never ending circle 😂😣

[Lynndy]

Hi Kate 345

Sorry to hear you are having such a hard time. Your symptoms sound very like mine. I have awful Lowe back pain which goes around my hips, pelvis and down my legs. It is at times crippling. I have recently been diagnosed with endometriosis but also adnemyosis. I also have regular urine infections . My gynaecologist has put the back pain pen to the adnemyosis. I am 7 days post op from a lap where they took my right ovary and Fallopian tube. Unfortunately she couldn't do anything about the adnemyosis so looks like a hysterectomy in the future. I hope you get sorted and find out what is causing the pain.

[Kate345 in reply to Lynndy]

It's hard because I already have the bladder thing going on it could be just that however it might be something else. It's hard to know.. with all these negative tests I feel abandoned and lost. Its anything from lower back pain, (mainly right side )to ovary area pain, middle back pain, leg pain, hip pain and pelvic, it changes.

My periods aren't ridiculously painful but I noticed the last two were possibly linked in time with this pain however it could be a coincidence.

Whatever is going on it feels inflamed and annoyed. When I'm stressed and anxious it feels worse. It could be IBS, it could be endo it's a guessing game at the moment.

My gp is so rubbish they just said we will refer you to a gyno today when I had an appointment and we discussed everything and the negative pelvic ultrasound. However it might not be gyno it might be bowel or just my bladder playing up. It's all so frustrating and worrying

[Hidden in reply to Kate345]

I have the same hip/leg/back pain, I was told by an endo expert it was adeno. Regarding the negative ultrasound, I urge to have one by an endo expert:

I've had cyclical bladder issues (pain, frequency, urgency, inability to empty) which I thought were Interstitial cystitis. Long story short, I had 3 transvaginal scans by a normal sonographer between February and May (I wouldn't accept the first two were clear), only the last one after poking everywhere did he say 'I think you have something in your bladder'. I had surgery to remove a 2cm endo nodule from inside my bladder!!!

Guess what? As a result, I was referred to BSGE endo specialist who sent me for a fourth ultrasound scan by an endo expert this time to map my pelvis in prep for a lap - lo and behold, it took her 5 seconds to shout 'Oh my god you have endo all over your bladder with a 3cm nodule going through the lining' - that means that my 3 first negative scans by a normal sonographer completely missed a 5cm endo nodule that was piercing my bladder!!!!!!!!!

She also Dx me with adeno on the spot, and a functional cyst on my left ovary!

So, ALWAYS insist insist insist if you know there is something wrong (it's YOUR body) and DEMAND to be referred to a BSGE specialist - google it to see who's the closest to yours - I've started seeing my team and it's a world if difference: they know exactly endo pains!

Good luck, I really hope you get some relief soon, I know all too well how bladder issues can rule (and ruin) your life!!! 🎗

[Starry]

The back pain into hip and legs sounds like what I've been experiencing since surgery, which is nerve pain ( either pudendal or sciatic) which can be caused by inflammation. So in theory it could be an indirect consequence of inflammation from your bladder issue.

It is very hard to differentially diagnose IBS from PID from Endo from Adeno from Endometritis.

The only way for a definite diagnostic is laparoscopy, which is why it's called the gold standard in diagnosis.

If that's an option that's been ruled out for now then you can just try a hormone treatment like the progesterone pill or coil and see if symptoms ameliorate.

But if you think Rectovaginal Endo is a serious candidate as things get ruled out and your symptoms stack up, it's worth knowing that it can be hormone resistant so at some point you may still need to consider a lap.

Stress and Anxiety will be making things worse as it causes (and is also caused by inflammation) which will exacerbate your symptoms. It's worth looking at mindfulness, and anti inflammatory diet or taking some herbal Kalms tablets for a few days to try to get on an even keel.

[Kate345 in reply to Starry]

That's the thing all this pain could be the bladder stuff which I'd be fine with as I know I'm getting treatment for it. I know my bladder is full of bugs and angry so to have pain not far from that area would be understandable

That's the issue so many things have similar symptoms. I should be relieved that scans and bloods and normal but it doesn't help when your still ill.

I have to admit the pain has been less this past week haven't had to take any pain killers - however ifs still there in the background effecting my mental health.

I've had to take some time off work - a couple of months - I'm self employed so taking time off isn't as difficult but it's annoying.

I feel my stress and anxiety 100 percent make the pain worse. When I start thinking about the facts that I've been ill for so long I start to feel panic and anxious

[Starry]

I can totally relate, emotionally I am in the same place. I've been ill over a year now and off work since July. It feels like Endo took over my life and I'm still not sure if I will ever get it back.

I'm getting lots of gastric indigestion symptoms which is the result of an episode of severe post op anxiety and the pain killers I imagine.

I'm going to start a meditation course to try and get my head back into a good place.

If you do decide to push for a lap try and get it at a BSGE centre on the grounds of the bowel symptoms making severe endo likely.

[Kate345 in reply to Starry]

It's difficult when you already have stuff going on to know what else might be going on if anything.

I'm having swabs next week to rule of pelvic inflammatory.. after then I'll start pushing for other options. If this just my bladder flaring up then it's fine as I know what's going on. It's the not knowing if it's something wise which is annoying after so many scans and blood tests. I hope something will of flagged up by now if it was anything else serrious

[Kate345 in reply to Starry]

They've suggested everything that causes lower right abdom and back pain.

Crohn's disease, endo, kidney stones, my bladder issue, pelvic inflammatory.

Thing is surely if it was crohn's a CT, ultrasound and bloods something will have come up by now?