Endo on bowel, stage unknown. Pain is back!

[flossy24]

Hi all

I am currently back at my docs after some truly horrid months with this disease. I was diagnosed with endo 2 years ago, it was on my bowel and pouch of Douglas but they couldn’t remove it due to its location.

I was put on the mirena coil which has helped as I don’t have periods but I still have all the symptoms.

It’s particularly bad when I’m ovulating. I’m either severely bloated and constipated and suffering with terrible flatulence, or my Bowles and stools are loose and I have to make sure I’m always near the toilet. It’s embarrassing and life limiting and it makes me paranoid and worried.

I suffer with nausea And acid reflux, this is daily. I have tried cutting out gluten and dairy anything seems to help.

I now have blood in my stools which I think is due the endo but I am also worried about. I am going for another ultrasound next week (I mean what’s the point I know what have?!)

Most of the time the pressure in my tummy is so bad that it hurts to sit down, I get pains down my legs and often it feels like a hot poker is going up my bum (sorry for the graphic content!) I try not to take any form of pain killers but honestly I feel like I constantly pop pills, my friends have started to joke I’m like a medicine cabinet. Co codamol used to make me sleepy and woozy, now it barely touches the side. I can’t take anti inflammatory so I’m limited with my pain relief options.

Does anyone else have this? I’m 28 and worried about my fertility, I’m not necessarily ready for kids but I don’t know what stage my endo is at now and what that means for me long term.

I guess I’m just looking for some reassurance. What sort process am I looking at for my second time going through drs and gynaecologists? Does anyone have similar symptoms and what stage are you at?

Thanks in advance to anyone who can share their experiences and advice.

[SEB88]

Hi, i am so sorry to hear about your endo symptoms. I too have bowel endo and obliterated pod, i can relate to the symptoms. I am 29 and my fertility is affected, but i have large cysts. I find buscopan works well and my colleagues joke i am a drugs cabinet too, i work at a vets as well 😂

I think your stage may be quite advanced, as you have a diagnosisi would look at a surgeon and hospital that are both listed on the bsge website. It may be helpful to look at the Sept 17 NICE guidelines and the ESHRE document as well in case your gp or gen gynea don't want to refer you.

I have just had surgery under a bsge center to remove a tube and drain te cyst and have started ivf. Not that this is the case for all endo ladies, i have a stage 4 friend who conceived naturally.

I hope this helps x

[Starry]

Are you being seen by a BSGE specialist Endo Centre?. General gynae are not allowed to operate on bowel Endo but BSGE centres are as they are specially trained to do so, so there may be a surgical option for you.

I am 42 and had a large Endo nodule on the bowel and had surgery in mid July.

Check your local BSGE centre

bsge.org.uk/centre/

The NHS treatment pathway specifies that bowel Endo must be onward referred either by your GP or Consultant to the special bsge service as it is severe.

google.co.uk/url?sa=t&sourc...

[Kaz87]

Hi, I am so sorry to hear of your symptoms. To be honest when reading it I felt like someone was reading out my daily struggles and symptoms! I also have endo on my bowel, and rectum. I think as the others said, try to get a re-referral from the gp to another consultant who is a specialist in that area. Also, has anyone mentioned zoladex treatment to you? I am awaiting an appointment with my consultant at the moment as my pain has been affecting me so much and I’ve been constantly off sick- very stressful. Also, have you tried other methods like acupuncture? I know it’s expensive but I’m finding that the treatments are starting to help a bit. It is really stressful living through pain, I totally understand what it’s like. That’s probably making your acid reflux worse. Maybe try taking gaviscon for that? And if it doesn’t clear ask the gp for a ppi like omeprazole? I’m a pharmacist and I hate taking pills but I’m used to it now unfortunately. I really hope you start to feel better. I’m sure the bleeding is nothing serious. Big hugs xxx