Paging Dr House!

[Sarahembull]

Hi
I wonder if anyone would be able to help? 39 yo, mum of 2 - one emergency c section, one planned.
Lower left abdominal pain started 2.5 years ago. Other symptoms included fatigue, feeling of fullness, pain during sex, rectal bleeding.
I've had every test under the sun- ultrasounds, MRIs, cts. I had an colonoscopy and endoscopy which were both clear, and the gastro team then sent me to gynaecologist.
I most recently had a laparoscopy, last Saturday, with the gynaecologist expecting to find endometriosis. However, once again, it was clear.
My bloods are ok other than CRP and ESR, which are always raised for me.
I'm seeing the gynaecologist on Saturday and have got these questions to ask:

• Could it be pelvic inflammatory disease- were any biopsies taken during the laparoscopy?
• Diverticulitis?
• If it was rectovaginal endometriosis, would it have been seen on the laparoscopy?
• Do you think it could be perimenopause? Vaginal atrophy?
• Lichen planus/sclerosus - my mum has lichen sclerosis
• Could it be adenomyosis? Is there any way to diagnose this without a hysterectomy? Although I’m done having children so if the hysterectomy meant the pain stopped, I would definitely consider it
• If the pain isn’t gynae related, do you think it could be bladder related? Interstitial cystitis/ulcerative interstitial cystitis?
• Do you think I need to see a urologist in that case? Potentially for a cystoscopy?
• Or do you think it could be something like sacroilitis - sacroiliac joint issues due to the psoriatic arthritis?

If you have got to the end of this, well done! But in all seriousness, I'd love to hear other suggestions of what it could potentially be. I also should mention I've got Psoriatic arthritis, and there has been some suggestion that the pain could 'just' be that. But I really feel like something else is going on. The pain feels very deep and is very uncomfortable. Also with the flares, they don't seem to be prompted by anything- food I eat, emotions I feel, stage in my cycle. They just start randomly and are excruciating. Thank you so much for reading, and any advice would be much appreciated. Yours, a very worried, in pain mum

You say the pain started 2.5 years ago but not how close in time that is to the second c-section? If it’s very close in time and that type of pain hadn’t happened previously then that’s a bit suspicious.

i have no words of wisdom or extra conditions/questions for your list, just a word of encouragement to keep up with asking questions and getting the specialists to check you out. See if you can get a multi team review to get the different specialists talking to each other and joining up the dots.

Endometriosis is notoriously difficult to diagnose because it can manifest in so many different ways, so if the pain cycles with your cycles my money would still be on that.

The only thing I can say is that diverticulitis would have been seen on the colonoscopy. I think with your questions you've got you're pretty well prepared.

When was the last C-section?

Thank you! Last c section was 2018, so it wasn't really soon after that that the pain began...

June 2018

Ok thank you. Yeah I wasn’t sure about the diverticulitis and colonoscopy…

How do you go about asking for a multi-team review? I think that’s a really good idea

I think it could be Pelvic Congestion Syndrome (especially with the left sided element). Often missed!

Have a Google and see if any other symptoms fit.

Professor Whiteley has done lots of research which is worth a read.

Ooh thank you. That definitely sounds like it ticks a few of my symptom boxes…

Hassle the doctors to organise one! Some are more open to it than others in my experience. It would be right here though when you’ve had so many different types of test.

maybe just try to say to one of the specialists that you’re going round in circles between everyone and you’re sure they’ve got the answer there somewhere in the team (and keep referring to things the other doctor said so they realise they need to talk to the other doctor rather than passing messages through you).

Mesenteric adenitis aggravated by scar tissue from the c section.

Have you had MRI scan of pelvis and sacrum? Slightly broad brush, but would look at SI joints, sacral nerve roots and the contents of your pelvis including vasculature and lymph nodes

Something autoimmune like crohn's or ulcerative cholitis?

I have something a bit like this only mild and intermittent. Sometimes feel like I have a pile in my vagina, also sometimes very sharp twingeing in/near my pelvic floor especially during/after sex (even though sex is only non-penetrative these days) I think in my case it is due to prolapse (rectum to vagina mostly tho I think a bit of bladder too) . One EMCS, one ventouse delivery, though now post-menopausal . I assume after all this examination and testing you know you don't have a prolapse?

Yes, they’ve looked and there’s no prolapse…

They’ve checked for those. Could be something autoimmune though as psoriatic arthritis is autoimmune and I also have hashimotos. Plus my mum has Addisons and my nan had lupus

I think I have had a pelvic MRI and it looked normal- I think that’s why she said to go for the laparoscopy…
I just can’t figure it out!

Thanks for your reply. I’ve had a look and I don’t think it’s this- my symptoms don’t quite fit…

Thank you. I will try and ask for this at my appointment tomorrow 🤞