Stage 4 endo awaiting bowel surgery- horrendous sickness

[MissyTx]

Hey everyone,

I posted 4 years ago about being recently diagnosed with grade 4 endo. I had two laparoscopic procedures and zoladex to treat a large endometrioma and endo that was pretty much everywhere.

4 years on I have a 1 year old baby that I was told I would likely never have! I am so so grateful to be a mum however now face more surgery as the endo has since returned rapidly with vengeance.

I had an MRI scan in Nov 17 which revealed I have endo in the POD and now on the external part of my bowel. Since being given the results I am scheduled for major bowel surgery in 3 weeks time, unclear at this time if this is going to be laparoscopic or full.

Over the last three months I have developed random bouts of vomiting which I am sure is connected to this. the last two times have been during my period but more recently a few days ago (mid cycle) I wake up in the night with tummy cramps feeling sick and then start vomiting with diarrhoea which usually subsides after 24 hours.

I really want to know if anyone else can attribute this to endo? I am rapidly deteriorating and although I know I am due to have the op soon I am still feeling horrendous and worried maybe it isn’t connected or that the endo has travelled up higher and that it wasn’t picked up on the pelvic MRI scan.

Can anyone else share their story? Also can anyone who may have been in my shoes advise how long my recover could/ is likely to be?

Hospital stay and time off work and whether I am likely to need a colostomy?

Sorry for all of the questions but I have a 12 month old to consider now so have to really prepare as best as I can.

I will of course put all of these questions to my surgeon in two weeks time.

Thank you for reading xx

[Hidden]

I assume you're being seen at a bsge centre? I did go through a stage of getting unpredictable, usually night time bouts of diarrhoea. I wasn't sick but then I'm not generally a sicky person. It would last for several hours and then stop and no-one else would be ill. By the time I was diagnosed and had my surgeries this had progressed to chronic constipation and I now sadly still have to use laxatives on a daily basis. I had obliterated POD/rectovaginal endo and further bowel endo on the right and it was all excised. I was in hospital for 2 nights (but I also had a hysterectomy/oophorectomy/stents/cystoscopy and further excision at the same time).

Chance of a colostomy are VERY low. We all get the talk but in the end very few women need it. This gives you the bowel surgery stats for the bsge centres from 2015, which gives you some idea.

bsge.org.uk/wp-content/uplo...

I would say you need to think of your recovery in terms of months rather than weeks but hopefully someone who has had a surgery closer to yours will be along to advise soon!

Wishing you the best of luck. x.

[MissyTx]

Thank you so much. Yes the surgery will be with a bowel surgeon and a gynae surgeon which does give some reassurance. 2 days in hospital for a hysterectomy and all that went with it. Wow. Although that doesn’t surprise me given the state of the NHS. I’m not a sicky person at all, can usually eat anything even out of date without it causing upset. Thank you for your response xx

[Starry in reply to MissyTx]

Hi Missy,

Congratulations on your lovely baby news but so sorry to hear your bad news.

I had a 3.2cm RV Endo nodule attaching my bowel to my vagina, extensive adhesions and endo on bladder, peritoneum and utero sacral ligaments. I too was warned about the risk of stoma or resection and had to see the bowel surgeon twice. I tried hormone therapy first as I was worried about the op but it didn't work. I asked the surgeon about where in the scale of their experience the complexity of my op was and was told it was mid point which helped reassure me.

I suffered most with chronic fatigue, back pain, Dyspareunia, bladder and fainting in bathroom issues but didn't get vomiting.

I had my excision at BSGE centre in mid July and recently had my 5 month check.

I was lucky , avoided the resection and stoma and got away with a deep bowel shave though I was under a long time as my nodule was bigger than the scan had shown and the damage signicantly worse. I lost about 4 cm2 of vagina and needed a partial vulvectomy.

I was particularly unlucky in that my recovery seems to have taken a long time as I developed a series of nasty post op complications starting with a week in Hospital with viral menigitis just 4 days post surgery which kind of derailed me.

I had 4 months off work , am mid way through a phased return but paused it before Christmas as I'm still struggling a bit with weight loss and energy due to some of my other complications.

Hope this helps.

[MissyTx in reply to Starry]

Goodness me, you absolute warrior! I’m so sorry you’ve had such a crap time lovely. I never even considered I may loose any of my vagina. I can’t imagine what a rough ride you’ve had. Have you received enough emotional support? Without being too personal, can I ask if the endo was detected in your vagina during your MRI scan? My surgeon hasn’t gone into a huge amount of elaboration, only to tell me that I have it everywhere. He told me I have it in the pouch of Douglas and during a physical examination he could feel something on the back wall of my vagina, however that is where I tore during the birth of my son so immediately I considered that it is only likely to be scar tissue and not endo.

Thank you so much again for sharing your story. Xx

[Starry]

Thanks MissyT

Yes, 2017 hasn't been my favourite year.

My GP, fortunately more clued up on Endo than most, actually found the nodule by internal exam (ouch) and diagnosed me , I'd gone in with bladder issues and flu symptoms thinking it either a kidney infection or fibroids .

The MRI was done to understand extent of the nodule's penetration and help the specialist and bowel surgeon plan the op.

Unfortunately the nodule was significantly larger than the scan showed up ( I guess these scans have limitations) and my operation took about 5 hours rather than the originally anticipated 2 because of the unexpected vaginal repair and extensive adhesion surgery. Hubby tells me the surgeon looked exhausted when he came out, I was last in on the day.

Better it penetrated that than my bowel though, so in a way I feel lucky, it could have been much worse. My difficult recovery is frustrating because despite the surgery's unexpected length it went very well of itself. My surgeon even used it as his reaccreditation submission.

Try not to worry, I've never come across any other lady it's happened to here or on fb so I think it's very unusual. My surgeon reckons it had been there since birth and been growing all these decades since puberty. I've always had painful sex and had to stop altogether about 14 months ago.

I've found a counselor thanks and am working on the emotional side of things as well as the physical.

I'm really hoping 2018 will be a turning point for me and bring better things.

My tips : try to absolutely minimise stress and anxiety, it definitely contributed to some of my very physical complications. Also after surgery avoid acidic food and alcohol and be extremely careful with ibuprofen and other painkillers . These can all trigger acid reflux especially if surgery has upset your digestive system which it can do. Reflux esophagitis has been the bane of my life since September the pains been worse from that than any other symptom or surgical pain I've experienced from Endo.

[MissyTx]

Bless you, I really hope that this coming year brings you health at least, if not fortune too! You clearly have a very supportive husband which must make all the difference.

Thankfully I can’t drink anyway. I’ve never been able to stomach more than a few drinks but since having my son the thought of a hangover is enough to completely put me off! not to mention the current unpredictable bouts of vomiting. I simply couldn’t self inflict it any more.

I am a firm believer in what doesn’t kill you makes you stronger. I will certainly take on board everything you’ve said. The bottom line is I want to be healthy for my sons future and my only option is to accept that surgery is inevitable.

Please keep me posted on your recovery. Everything crossed for you xx

[ellis13]

Hello!

Well I can completely sympathise with all of those symptoms. I have also the last 4 months have started waking in the middle of the evening with severe cramps, vomiting, diarrhoea, body shakes ect...

I am waiting for my next appointment (8th Jan) to receive my results from a recent mri scan I have had done.

I thought it wasn't endo related but my gyne seems to think my endo has spread further a field on/around/ embedded my bowel.

Good luck with your surgery, please keep us updated xx

[MissyTx]

Hey Ellis, thank you for sharing your story. So sorry you are in this same shitty boat! It’s just hideous isn’t it...I’ve done a fair amount of research about the vomiting side of things and it seems that although uncommon it does happen. I am absolutely convinced this is linked to the bowel endo now as it is certainly worse mid cycle and during my period.

AF is due any day now...pass the bucket. At least I won’t have to worry about shedding the excess Xmas cals...every cloud and all that 😂🤭

Good luck with your results lovely. Keep us updated xx