Endometriosis, stomach inflammation, severe back, buttock, leg pain, possible bowel prolapse and other issues. Anyone else ?

[car08500]

Where to start? I'm 44 and believe I've had endometriosis since starting periods. Formally diagnosed late 20s. 3 lots of surgery..last one 9 years ago. I think stage 4. Have endo on my bowel.

Started getting bouts of more tummy cramps and urgency to open bowels on occasions last year. Saw GP...had bloods, and stool sample..normal..diagnosed IBS. Mentioned at my routine gyne appt due to endo on bowels and she sent me for MRI (feb this year) This came back as ok for bowels but showed some 'solid bits' in ovarian cyst (had the cyst for a while). Some cancer markers also slightly raised. Gyne not concerned, believes is all endo including the back pain. Having surgery hopefully this summer.

Noticed sometimes I'm missing a period. Wondered about peri menopause but not had any tests. Periods are extremely heavy and pain can be bad but had it much worse in the past.

Beginning of the year I started getting bad lower back pain. Went to Dr's and saw physio once, diagnosed as mechanical. Ended up taking naproxen in Feb (previously prescribed for endo many years ago) as I was going on holiday and really didn't want to suffer. Back pain improved and generally been ok until recently.

Around March time started with pain/uncomfortable above tummy button. Made sitting upright and driving really uncomfy. Then bad bloating after eating, gnawing pain, later burping, indigestion symptoms and pain when eating. General awful inflammation pain. Found myself hardly eating due to this, lost weight, back and forth to GP, eventually they agreed endoscopy, showed mild stomach inflammation, biopsies normal. Also had upper abdominal scan and all fine. Stomach felt better since been on omeprazole but not totally normally.

In amongst this started with pain up bum. Then this week back ache got worse. To the point where I couldn't hardly move, get dressed, lift leg or get comfy even sitting. Pain also in buttocks and all down legs to feet (mostly left side). No pain killers touch it (codeine, naproxen, paracetamol). Been back to GP who also did a rectal exam (painful) and felt a mass. Thinking could be prolapse but on the 2week wait for colonoscopy. Obviously terrified. After opening bowels yesterday, I do think I have a prolapse. Feel something on wiping but then it disappears?

Back, leg pain slightly improved today.

Other symptoms. Achy legs, was occasionally at night, now seems to be most days anytime. Feeling lightheaded at times ( full blood count normal).

I also have peri osteoporosis. Take vitamin D. Just had dexa scan and awaiting results but they said looks similar to last time.

Full blood count, lfts, u÷es normal. Blood pressure normal. Tests for chrons, coeliac, inflammation, diabetes all normal.

Oh and last weekend I woke up to swollen face (especially around the eyes) and other areas on my body. Then the day after horrific throat, not able to swallow, white spots on tonsils. Got prescribed antibiotics for tonsillitis.

I just don't know whats going on anymore. Is it a series of unfortunate illnesses or all linked somehow. Just really worried

Anyone else anything similar and any advise 🤞

[Lindle]

Someone should be putting all the pieces together.

You have a history of severe endo including bowel involvement. Stage 4 is rectovaginal endo which affects the area behind the uterus - pouch of Douglas (a fold in the pelvic lining (peritoneum), cervix/vagina, rectum/sigmoid colon, uterosacral ligaments that run either side of the POD and bowel from the cervix and often the ureter is involved. There will usually be ovarian involvement with endometriomas (chocolate cysts). The marker CA125 is often raised. This predominantly affects the left side. Along with generalised endo symptoms typical symptoms are any combination of lower back pain, pain with sex/examinations, shooting pains up vagina/bum, pain referred down leg (usually left), pain sitting/walking, bowel problems.

Severe endo must only be treated in a specialist endo centre working to BSGE standards. These started to be set up in 2008/9 but no one really knew about them. The BSGE published a list of centres in 2010 which is added to every year as specialist centres are accredited by them. NHS England published the treatment specification for severe case to be treated in tertiary centres in 2013 but again we have found over the years that GPs and even gynaecologists still don't always know about them. So back in 2009 it is likely you were operated on by a general gynaecologist potentially without the advanced skills required. As it happens I had my last surgery in 2009 - a complex 7 hour excision - but I had sought out a top endo expert on google who fortunately turned out to be one if the best in the UK and subsequently was on the first BSGE list. Unfortunately you are likely to have a complex case of stage 4 endo with deep adhesions adding to your pain.

It is essential that you aren't operated on again by a general gynaecologist in secondary care. Maybe you are already being seen in a specialist endo centre - do you know?

You need a dedicated scan by someone highly skilled at looking for deep endo to map your entire pelvis prior to the multidisciplinary team discussing your case in a centre - either MRI or transvaginal ultrasound. MRI is best for bowels and TUS for rectovaginal endo. Both will show endo cysts. The 'usual' TUS won't show deep endo as they aren't trained to do it. I run an endo guidance group and we have a list of private ultrasound experts that members in your sort of situation often pay to see. It is around £300-£400.

The most important thing with you history is whether you have been referred to a tertiary endo centre?

I'm putting the link to the NHS England treatment spec below. If you are in one of the devolved boards they should still apply the same procedure. If I were you I'd get copies of all your previous lap reports, scan reports, any histology and everything else they might have. The BMA have a good guide on this which I'll link below. If you look on the hospital website where the surgeries were done they may have a page under 'subject access request'.

england.nhs.uk/commissionin...

bma.org.uk/media/2821/bma-a...

Please feel free to message if you need any help with this. x