Bowel endometriosis

[molinski]

Hi

I have recently been diagnosed with Bowel endo on 19th sept. Very extensive and advise given was to ttc for 1 yr and also a bowel resection. Has anyone had this kind of treatment for endo before? Feeling a bit meh about it today since AF has arrived and feeling so rotten.

TIA

Just wanted to offer a handhold. It is rotten - sympathies, molinski. I had endo some years ago, confirmed with a laparoscopy which revealed that everything was stuck together with extensive adhesions (bowel stuck to pretty much everything else).

I wasn't ttc and the solution for me was a Mirena so I'm sorry I can't offer any direct help but hopefully someone else will be along with better advice. Solidarity in the meantime though.

@5000FingersofDrT thank you for your kind message! My poor gut feels horrible and I get such an upset tum too it's all just so gross hoping that our little bub is just around the corner and I will get a break for a while at least! Think I'm feeling the stress of it all more so today as af arrived as generally been feeling quite strong about a bit of a shocking diagnosis x

@5000FingersofDrT they have suggested mirena but obviously not an option for me just yet. Do you find this has improved your symptoms enough? Sorry to hear your all stuck together too! It's quite scary to think what it all must look like x

Sorry to hear you're having such a rotten time, molinski. I know the Mirena can get a bad press but for me it was little short of a miracle as it did exactly what I needed, ie stopped my periods in their tracks so no more pain. But as I say, I wasn't looking to start a family and fortunately it meant I could avoid further surgery.

Are you seeing an endo specialist? NHS or private? There can be quite a difference in understanding of the condition, to put it politely.....

Thank you @5000FingersofDrT perhaps if we get our little Christmas wish it will be something to consider later down the line. I'm seeing gynaecologist on the NHS. My 6 week follow up appointment from my lap done on 19th sept is 27th December. Not really good enough when I was told laying in recovery on my own that I had stage 4 endo with the treatment being having a major bowel op. So I've contacted the private secretary for the consultant that treated me and have enquired about paying to be seen sooner so I can discuss this further before end of the year! I've just turned 24, I bought my house when I was 21 and it was a massive renovation project so me and my partner wiped out all our savings otherwise would have definitely looked into private a lot sooner 🤦🏽‍♀️

Ah bless you molinski, that's a lot to take on. I also had the joy of the gynae coming to see me in recovery and was told they'd found 'no active endo' despite the major adhesions. It took a self-referral to a private endo specialist who took literally one 30-second glance at the photos the first gynae had taken during the lap and said 'you have Stage 4 endometriosis'. So much for the first one then......who wasn't a specialist in this awful condition and who I'm afraid didn't really seem to be very understanding.

If it's any consolation you're young (sorry, I'm sure everyone tells you this and you're sick of it ) and I've read many stories on here of women who go on to conceive successfully despite endo.

Small practical tip....have you tried a TENS machine? I had one and it's a real help. Worth a try, anyway.

@5000FingersofDrT are you in the UK? I wonder how much further I would get with a specialist even just for a talk about it all. Lol, I don't mind - the drs said the exact same that I am lucky to have caught this when I've got plenty of time left on the biological clock! They did also say that nothing was in my tubes or around my ovaries although they are stuck in one position. Not really sure what that means. I hadn't thought to use a tens machine. Maybe it's worth a go. Thank you for the suggestion. It's a wonder these things aren't recommended by drs! At least not by mine 🤦🏽‍♀️

Yes, I'm in the South-East, molinski. Funnily enough I was just clearing out some old papers for shredding stuff earlier today and saw an invoice from the private specialist - he basically just advised me, no actual treatment, but it cost £120. Well worth it for expert guidance quite honestly, if you could perhaps stretch to a few hundred. Of course I realise that could be asking a lot if you've got a lot of expenses but one to bear in mind?

Have you looked at www.endometriosis-uk.org/get-support? The forum can be very helpful.

@5000FingersofDrT oh really I am also in the south east! About 40 minutes from London. I think I will certainly look into paying to speak to someone just so I know what's what and give me a second opinion I guess. Especially from someone who knows their stuff. I am assuming from your previous replies you found this beneficial. I don't think a couple of hundred would be too much of a problem if it's going to give me more confidence - I'll just enjoy my beans on toast until my Xmas dinner 😂🤪 I have looked at the endometriosis uk website but haven't delved into the forum yet. I have actually found Mumsnet to be very emotionally supportive and I feel less alone in my little endo bubble! 💖

There’s a group on facebook called Nancy’s Nook about endometriosis, I’ve just joined and it’s a bit strange with their strict rules but essentially they have a list of trusted surgeons worldwide, private and NHS so definitely worth having a look.

Best of luck, I’m fighting my corner just now too 😊

@5000FingersofDrT thank you so much for your messages i really appreciate it and I'm going to get straight in that group! You go girl. I'm telepathically fighting your corner too. We got this! X