What is wrong with me, don't know what tests to push for next

[canteatlovefood]

It's been about 4/5 weeks since my symptoms started. The first thing that happened was painful sex. Followed by constant pelvic pain (like period pains which I don't normally get) which radiates round to the bottom right of my back.
Then a few days later I started feeling bloated and tight and couldn't eat much without feeling full/nauseous.
My stomach is now 3 inches bigger than it was but I have lost 7lbs weight (probably because I'm not eating anywhere near as much)
My stomach is the same all day- even without eating anything.
My gp referred me for blood tests (at my insistence) and did a CA125 test which was normal.
I have had a private ultrasound today and was advised everything looked normal, both ovaries fine etc.
So what do I do now? Could it be something gastro related, assuming that couldn't be seen on ultrasound?
I am going back to my gp who I'm pretty sure is just going to try and fob me off with 'pulled muscle' again. But I look 5 months pregnant! I can't eat properly and I'm in pain all the time so I can't carry on like this!

How did you get on today @canteatlovefood

@RedCarsGoFaster
Thanks for asking!
I spoke to another gp as mine isn't it, and tbh I kinda got really annoyed with him. He said I'm best speaking to same gp as last time but he's read through notes and it mentions a pulled muscle!!
So I asked him which muscle I may have pulled that means my stomach is constantly bloated plus all other symptoms. He asked me what I think is wrong!? I was like I don't know hence contacting you and said I think I need further investigations.
I am on the call list to speak to the original gp on Thursday now. If she isn't in (because he didn't know why she was off or when she'd be back) then I would have to go in and see him instead.

I got off the phone and had a little cry to my husband. It's dawned on me that I think this is going to take months of pain whilst waiting for a referral.

He did say something like, could be IBS, endometriosis and something else. And I was like so are we just going to guess or actually find out!?

I was going to ask if your bowel was checked. Unexplained weight loss, loss of appetite and bloating are all symptoms of bowel problems. Keep going back and pushing the GP for an answer.

If you don’t get any satisfactory referrals on Thursday, speak to the practice manager. Something is definitely not right and needs looking into.

Pelvic inflammatory disease? It's not always caused by an STD, mine developed after having the coil fitted, which resulted in an infection, there are others causes too.

@Moonchild18
I'm going to mention this. I
received a letter yesterday coincidentally and have a smear booked in tomorrow.
Gp rang today but I was on a work call so is ringing me back tomorrow morning.

Would it be unreasonable to take a list in of things I want to be tested for? Gp's always ask me 'what do you think is wrong' and it's a bit like isn't that your job?

I don't think it would be unreasonable to have a list to take to the GP. It's probably going to be a process of elimination so the sooner you get started the better. I will say however I just went back and forth with my GP for months, it was the sexual health/family planning clinic who diagnosed me eventually. I wasn't getting very far with the GP so thought I would try there, they have gynaecologists who work in the clinic who know more about this stuff then the gp did.

I'd push for a colposcopy. Also I don't what the Ca test you had done is but have they tested stool samples?

I think you would want to be ruling out the most serious things like bowel cancer and ovarian cancer.

I would also want to rule out sarcoma
in the abdomen

Hopefully you’ve managed to make some progress today with your gp.

Ok so spoke to Gp, he was really lovely (think he could sense my distress!)
I am doing a stool sample, blood test for celiac and have been referred for a camera test due to the feeling sick/nausea after eating.

He suggested there may be multiple things going on and we had a conversation about endometriosis just because I still have pelvic and lower back pain

So I'm feeling much better that we've started the process of trying to rule things out.

That's great news,I'm really pleased for you op.

I'm also at the start of a diagnostic process and completely understand how you feel better knowing that investigations are going on.

Good luck!

@007DoubleOSeven
Thank you!
Does feel like a bit of relief knowing I'm being taken seriously and they're going to investigate.
I hope you get sorted too!

@canteatlovefood could be Andenomyosis, I've recently been diagnosed with similar symptoms. It's where the endometrium grows into the muscle wall of the uterus. It can be detected with scan. Often confused with endo. Apologies if already mentioned not had chance to RTFT

I saw a Facebook post about stomach cancer today which was pretty sad. I don't want to worry you but it's worth considering if your symptoms match.

@canteatlovefood thank you :)

Just thought I'd do a little update.
Another set of bloods done and normal. Had a decal calprotectin test done and that's normal.

Got a date for my endoscopy 13th September and cried a little cos it feels like forever away and everything is getting me down.

I've lost 11lb now, it's not dropping off super fast but it's just consistently falling because I just cannot eat properly. Still looking 5 months pregnant tho.

I assume the fecal calprotectin test rules out any bowel issues ?
Just concerned it's gynaecological and if the endoscopy is clear I go back to another lost wait list for the next test.

Sorry just feeling a bit mopey and fed up tonight

Hi, I was just wondering how you got on with everything and if you are any closer to finding out the cause? I’m in a similar position. I’ve had similar pain, pelvic pain which then radiates round to my right hand side lower back, since February. Doctors just fob me off. After a lot of pushing, after I was originally told to wait and see if the pain disappears, I’ve had all bloods, ultrasounds, calprotectin test, colonoscopy and a bladder test which have all come back normal. 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. Currently feeling 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 x

@canteatlovefood iv been ready this whole journey that you have been on and wondered if you had any answers in the end?

@Abbyj
Hi!
I had a clear endoscopy and then had a CT scan just before Christmas. Went in for the results of this middle of December and there's an area of concern on my terminal ileum, showing thickening and that I could potentially have chrons disease (that's all he said) and I had a small bowel MRI last week.
I've had an appt through for the results for next Tuesday and I'm trying not to read to much into the quick turnaround.
I was referred through a private hospital but as an nhs patient and I think if I hadn't of been I would still be fighting for more tests following the clear endoscopy. This hospital insisted I saw a consultant prior to the endoscopy so it has been the consultant that's ordered all the tests and stuck with it (mainly because of the weight loss I think)

@canteatlovefood bless you this has been going on a very long time. I really do hope you get to the bottom of it! How’s your bloating? Are you still losing weight? Good luck for Tuesday and please do keep us updated 🍀 x

Please do not read anything into the fact that you have an appointment for your MRI results next week. If you're an NHS patient but in a private hospital, in my experience you would normally come back for scan results 1-2 weeks after anyway. I appreciate that different hospitals will work in different ways, but it doesn't tend to be like main NHS hospitals where you have to wait 6 weeks. Please don't be concerned about having the appointment next week as that's standard.

Unless a scan has shown anything concerning - which is extremely unlikely - then the consultant won't even look at your scan results until just before you come in for your appointment. If there is anything worrying on a scan, usually the radiologist will contact the consultant or their secretary directly to alert them.

When I read what you've been experiencing, it's not unlike a problem I had several years ago. Vague abdominal pains, back pain, bloating, wind etc. I saw my GP who did the CA125 which was normal. I even went to the GUM clinic because I was convinced I had a dose of something (after a bad relationship) and they were brilliant and tested for everything which were all normal. After various scans, it turned out to be a gastro problem.

Bloating is the same. I look about 5 months pregnant permanently. Kind of used to it now. I think the major concerns are that I'm still losing weight and the lower right sided back pain is now all day every day. Paracetamol isn't touching the sides and ibuprofen makes everything a million times worse - so I think most likely I have chrons. Which is rubbish but could be worse I guess!

OP, did you ever get to the bottom of this? I’m having similar issues.