Desperate for some advice

[Marvel-]

Hi, im hoping someine can relate.I was diagnosed with Endometriosis about 11 years ago and have had my left tube and ovary removed on my 3rd laparoscopy. I've got an appointment this week to hopefully get a date for a hysterectomy. Over the past 4 weeks, I've had chronic diarrhoea, heavy bloating across all of my abdomen and over the past few days shortness of breath. It got so uncomfortable that last night I went to urgent care. The doctor said he thinks it's endo on the bowel. He checked me over and told me to contact ny GP to have a blood test done, prescribed naproxen and sent me on my way. I've never had anything like this pain before. It's starting to impact work and home life as I'm constantly walking around with a hot water bottle or a tens machine. I'm on a strict gluten free diet amd have a balanced diet so I can't be food induced.

I am aware there was a trace of endo on the surface of my bowel on my last laparoscopy in 2020. Is it possible for it to have moved into my bowel? Has anyone had this or something similar happen to them?

Sorry for the massive rant x

[Purple_Badgers]

Hi! It’s definitely possible for endo to spread and even grow into your bowel. It happened to me and ended in an emergency operation because my symptoms were not taken seriously enough and carried on for years.

When was the last time you had some sort of scan? Given that your symptoms are suddenly much worse, it seems that it would be sensible for your gynae team to order a scan first, before operating again. So they have a better idea of what to expect.

I’m with a BSGE accredited centre, waiting for hysterectomy, removal of endo and separation of adhesions as everything is stuck together. It has to be a multi-disciplinary team who tackle it, as there is bowel involvement. So this might turn out to be necessary for you, too?

I’m glad you’ve got an appointment very soon - you need to discuss these worrying and debilitating symptoms in depth and formulate an urgent plan with your gynae. A hysterectomy is not a cure for endo and any endo that is not removed has the potential to grow, spread and cause further pain. Or if you’re unlucky, serious issues with your bowel or other organs. If they need to refer you to someone else with more expertise, then so be it.

Wish you all the best x

[Marvel- in reply to Purple_Badgers]

Thank you so much for your reply. I'm sorry that you've had a similar experience.I feel like nobody is really taking it seriously. I've just had some blood tests done this morning, so hopefully it can tell me if it's an infection or if its endo. I'm still having endo pain in my lower abdomen but the bloating is also towards the top of my abdomen, hence the shortness of breath when walking around. Usually, when I have a flare up it doesn't go this high up which uncomfortable.

I last had an MRI in 2021, it didn't feel that long after my last laparoscopy but they didn't say much with the results. The consultant I have an appointment with on Thursday is a telephone appointment only. I have requested that I'd like to be seen so they can see how bad it looks but that's not looking likely.

Is there anything you did in the meantime to manage? I feel like I've admitted defeat and taken the day off work for the first because I feel like I can't function properly.

Thank you xx

[Purple_Badgers in reply to Marvel-]

I feel for you - it’s so difficult trying to get anything done when you feel so unwell. Lots of guilt - feels like somehow you’re being a wimp and letting people down if you need time out - but we are far too hard on ourselves! Try not to feel bad about looking after yourself. You deserve as much care as anyone else. And you could probably do without the extra stress…

When I was still trying to work, I used heat patches or hot water bottles, regular paracetamol and ibuprofen, peppermint tea, chamomile tea, buscopan tablets, indigestion remedies and probiotic capsules. Occasionally took co-codamol, but only at night or if I was able to go back to bed, as they made me so drowsy.

Ended up taking 1 or 2 days off each month due to pain & vomiting, which sounds crazy now, but I really had no choice. I couldn’t function. I just had to be honest with my employers about all my health issues and appointments etc, so they could tell I wasn’t taking the mick. The worst of it happened during covid, so at least I didn’t have to cope with work for a time 😂

Anyway, I hope you can get seen in person as it’s much easier to communicate your point face to face. xxx