Severe Endometriosis, Hysterectomy and Bowel Resection

[Endo_Jaded]

Have you had a bowel resection or were you at risk of one?? Please read. ♥️ 💛

So, nearly 26 years of extreme period pain, bleeding heavily, anaemia and impact on life.. was finally heard in 2017 when my endometrioma showed up and caused enough pain (so we knee stage 4 endometriosis). Prior to this the pain I was truly in was masked with the contraceptive pill! I cannot believe how the pain I was in was so bad but somehow the severity of that pain was dulled and caused this disease to spread like Japanese knotwood.

In 2017, my GP pushed twice for US and finally the hospital obliged and my journey began.

I had a lap in 2019, it was supposed to be curative but the surgeon was not trained or skilled and did no prior investigation, thus didn’t see the severity. In fact he looked at a scan prior to me going down and said “your ovaries and tubes look clear” 33 mins later he closed me up and I was told it was so bad I need to be referred for an urgent MRI and a specialist.. that was Nov 19.

Albeit, covid happened but because this surgeon did not do further investigation in 2017 when I explained my symptoms, he seen my bleeding first hand and the endometrioma, extremely high CA125, risk of cancer from my maternal side and my results indicative of PCOS too..and because when you are promised you won’t go to the back of the queue, you do go to the back… my Endo grew.. what was severe became more severe.. it ate into my bowel in Jan 2020 5mm and by May 2021 10mm while on drugs to induce menopause.

I now need a Bowel Resection with a hysterectomy, and via Laparotomy not Laprascopic.

Too top off an already horrible experience, I was posted the stoma kit to practise with, no conversation with a nurse, no emotional support, no compassion. Just walloped one more time.

Then on my birthday I get a pre-assessment letter ‘fill in and return within one week, failure will result in you being removed from the waitlist’

I haven’t even had the sigmoidoscopy yet (I’ve had CTC and Colonoscopy already previously).

So, if anyone has been through similar, I really would appreciate your story, you advise, your tips, support and kindness.. I don’t even know which questions to ask.

#endometriosis

Love

Endo_Jaded

[Purple_Badgers]

Morning! So sorry you’re going through all this & that they didn’t catch the endo before it got so serious xxx I had 30+ years of painful periods & constipation (bleeding always normal/light though). After 3 years of vomiting every period on first two days, I suffered a total blockage of my bowel in Dec/Jan and had an emergency resection at the end of Jan 2021. Due to the position of the endo damage (near my appendix) I didn’t need a stoma. I think it’s awful that they left you to wrap your head around that possibility on your own, then to top it all off sent you an abrupt letter on your birthday! I should add that my resection and scar healed really well. My bowels were a bit over-sensitive for a few months. I still have loads of symptoms and am waiting for an MRI which might help me & the BSGE centre decide how to proceed (probably need lap & excision, hoping to avoid removing any organs…) I have a date for a chat about the MRI, but no date for an MRI, so I will probably end up having to change the date of the clinic appointment because I can’t get an MRI date yet…. Seems like similar is happening to you! It’s all so exhausting… Feel your pain xxxx

[Endo_Jaded in reply to Purple_Badgers]

Thank you Purple_Badgers, it’s nice but not nice to know someone has been in a similar shocking situation to say the least. That’s amazing that they were able to do the resection without the stoma. I can live in hope. I feel like because I’ve instructed the solicitor to act on my behalf that they’ve went from zero to a million in warp speed. But forgot I need a chance to breath sadly.

I definitely believe the protocol should be High Def Ultrasound-MRI-Colonoscopy-Laprascopy and then proceed from here. Not In the reverse.

Do you know how you’ve avoided the stoma? Was it simply location based or were they able to do a disc resection? I’ve heard of them removing appendix due to Endo being all over it, but don’t feel I’ve much luck that they’d find a way to save this now.

I too suffer with horrible GI issues around ovulation and menstruation but the constipation into looser motion is confusing both are painful but happening at the same moment. I can’t touch senna for this reason. I do bleed but I always believed this was fissures but sometimes it’s a lot or seems that way. I’d accept all this knowing it has to happen to save me but I feel like, sometimes they forget we may need counselling or support.

I wish I could help all my Endo warriors, it angers me how we are ignored so much or dismissed.

I hope your own journey improves too. I ended up paying for a second MRI for £400 of pelvic area because they refused to do a second. It’s the one that showed the worsening situation. However, my friend found a woman Gynae or Sonographer who does a specialist ultrasound and can really see in, in Southampton. She’s expensive, too far from me but I watched her video and shows we should be offered similar care under NHS. Xx

[Purple_Badgers in reply to Endo_Jaded]

Hiya - I think I was “lucky” that the growth was in the first part of my colon. I’ve had a whole length of colon and the appendix removed, so maybe 1 side out of the 3 is gone, if you’re looking at a diagram of the guts… Fingers crossed that they can do a resection on you without the need of a stoma too, but best to be mentally prepared just in case.NHS gynae/endo care should definitely be a lot more proactive and comprehensive than it has been til now. I’m hopeful that it will improve gradually, as it’s been mentioned in parliament and in the press a fair amount recently. Though that leaves us to struggle on with the current situation!

I did consult a private gynae, as my hubby has some health cover with his job, but I was still on his waiting list at the time of my big crisis. Not that I was very happy with this gynae - he was dismissive & condescending, didn’t listen when I told him I was done trying to conceive and told me the vomiting was probably psychological (I knew damn well it wasn’t and was pretty insulted). But I was going to let him operate anyway- what was I thinking?? Lucky escape there too, I think!

Wishing you the very best of luck with it all. My theory is that if we had the strength to get this far, suffering all that we have suffered, then somehow we will make it through all this too 💪😃 Xxx

[Meriel_Owen]

I'm so sorry you've had to go through this. Sending you big virtual hugs. I hope you don't mind me asking, but did you have a colonoscopy? I have rectal bleeding and pain that always coincides with my periods. I've been examined and had colonoscopy which came back clear. I've been told its probably hemorrhoids and been left to it, but my gut instinct is telling me it is related to my endo. Should I be pushing for an MRI next?

[Endo_Jaded in reply to Meriel_Owen]

Hiya. Yes my colonoscopy failed due to me having a tortuous colon (extra length which I hope helps) so I had a colonoscopy via CT this showed up clear, but the MRI showed the Endo deep in the wall from the other side. So it hasn’t at that time are through the wall but it is significantly embedded now. Honestly, push for an MRI or specialist Ultrasound but like I tell everyone, start a health pot with your savings. And prepare to save a little towards things you may need. I saved the £400 for an MRI as they refused to do a second a year later and said “we just expect it to be bad” so I paid private to know how bad they were leaving me and it was worth every penny! Even if it came back clear it would have been worthwhile.

My family have a long history of Endo and hysterectomies etc. so now I’m saving for my 17 year old too and she is as well. Just incase. She won’t use the pill (it is literally the worst thing for us for hiding true extend and exasperating the growth I feel). She isn’t sexually active and has never been so that’s ok there, but we agreed prior to becoming active she will get a baseline MRI of where she stood at that point to monitor.

Definitely push if you have an instinct, my instinct told me and I refused to be told it’s in my head, cause if it were… well I could will it all away then couldn’t I.. idiot doctors sometimes!

If you have rectal bleeding definitely do it just for peace of mind. Xx