Stumbling around in the dark...

[coffeecup35]

Hi - first post here sorry if its a bit long but I'm really struggling

I'm Mum to an 18 yo who has had a horrible 6 moths and I'm trying to help her navigate her health and the 'system'. She was very ill starting last summer and was diagnosed with a very large, high rectal abscess that eventually caused an A&E admission with sepsis. TMI warning - It finally spontaneously drained through her vagina while in hospital awaiting an examination/drainage under anaesthetic late last year. Pretty traumatic for anyone but for a teenager it was devastating ... The colorectal surgeon was unable to say why she has got the abscess but hinted at some sort of infected cyst (duplication cyst?) However, although the abscess drained, she has constant issues now with a heavy vaginal discharge and pain but several MRI's have failed to show any sign of a fistulae.

The colorectal surgeon referred her to Gynae who couldn't do a proper examination as it was just too painful. The Gynae thinks the constant discharge is peritoneal fluid and hinted at a problem with the pouch of Douglas and said she wanted to do a lap with the colorectal surgeon. Its now becoming apparent that the pain and flare ups are period related so while we wait for the lap (no indication yet as to when it will be) I'm trying to work out if her symptoms are more endo related and not a colorectal thing at all - do any of the symptoms sound familiar from an endo perspective?

The combination of the length of time we are having to wait, no commitment from the people we have seen as to what the problem is and no clear pathway to follow are having a massive affect on her.

[RambleOn]

CoffeeCup, what an absolute nightmare!! We're all supporting you from afar - I'm so glad she has such a dedicated and smart mum with her.

I'm no doctor. I had a lap to treat my endo this past October and they removed 20 lesions across my rectum, bowel, bladder, and abdominal wall. I do know that the pouch of Douglas is a common hiding spot for endo, and what you say about all of it 'flaring' around the time of her period certainly seems in keeping with endo ... to a much less drastic extent than your daughter I had colorectal symptoms leading up to my surgery, and had been previously (mis) diagnosed with Crohn's and IBS.

Since the diagnosis for endo happens to be through a lap, are they willing to have an endo specialist on hand during the procedure? If not at the very least I would think they owe you a copy of the video / photos that you would be able to share with an endo surgeon to review after the fact. It's not easily recognized or obvious to non specialists, so if both of your guts are telling you this might be endo perhaps you shouldn't let it go easily. I won't name drop, but my surgeon has a 'blue dye' technique you can look up that underlines how easily the lesions can be missed with the naked eye.

Best of luck to your daughter I truly hope she gets this figured out and on the way to recovery soon!

[Lizzielizzielizzie]

This sounds so difficult. It sounds as though a lap with a bowel surgeon and a gynae is exactly what needs to happen. Hopefully you can ring the appointments secretary and try to get her on the cancellation list to make it happen as soon as possible. Big love to you both, she is really going through the mill. ☹️

[coffeecup35]

Thank you so much for your responses - finding this site has been a godsend. The more I read the more I think DD's problems may be endo related rather than gastro and other things from the past couple of years are beginning to make sense; heavy periods and awful cramp, bloating/wind/bowel disruption just prior to and during her period, pain/cramps after having alcohol, pain in pelvis and hips during period, sex unbearably painful etc...

I don't want google doctor to lead me down the wrong path but the snail like speed of the NHS (not knocking the amazing NHS - I'm just being pragmatic) means if she doesn't get a lap date within the next 4 to 6 weeks (we've already been waiting since November) then we will have to raid the piggy bank and get it done privately. Her life was blown apart by this - she had to drop out of her dream university place after Christmas she was so ill (her immune system is shot) and she desperately needs some progress before her scheduled return to Uni in the autumn.

I now know there is an BSGE centre not a million miles from us - do you think its worth asking the GP if he's prepared to refer her there?

[kelsbels88]

Hi

I dont know if this is helpful or not but thought I’d share I have stage 2 endo and was previously Misdiagnosed too with gastrointestinal problems, suspected ibs, at one point they thought I had an intolerance to wheat and gluten as my endo effects my bowel movements and my periods are very painful.

I would definitely see if a specialist who knows about endo could be there for her surgery or look afterwards and there is nothing wrong with asking for a referral. Sadly with the way our nhs has gone you really need to push the gps to get something going. Keep nagging painful periods are not normal.

Good luck xx

[coffeecup35]

Thanks again for the replies. A pre-Op appointment for today out of the blue! A colorectal surgeon (specialising in pelvic floor repair) and a gynae.(specialising in PMS and obstetric repair) have reviewed her notes and want a lap done asap. Really hoping its sooner rather than later but the bed pressure on the NHS hasn't got any better yet. I'm convinced they will find endo if its there to find - both are very experienced consultants surgeons and DD was impressed with the gynae who she felt had really listened to her.