Anxious - Endo and bowel surgery

[Highlandgoat]

Hello all!

Joined this group when I discovered I had endometriosis. I’ve since had a laparoscopy which has confirmed severe endo, obliterated pouch of Douglas, adhesions to the bowel. MRI has also confirmed adenomyosis. Not great! 

I’ve tried dienogest which just turned me into a psycho so not keen to try that again. I’m down for a laparoscopic hysterectomy which I’m ok about but it’s all the bowel surgery that I’m concerned with, especially the stoma and if I’d end up having it long term.

Is there anyone who was also advised the same and what the outcome ended up being?

I’m scared and feeling very anxious about it. Any advice would be welcome. 

Thanks 

[Micasmum]

hello, I’ve just had my Laps and I’m one week post op.. I had endo that affected my bowel too.. it was taken out and part of my bowel stitched back.(I suppose) it depends how bad the endo has infiltrated ur bowel.. any idea ? Most cases that’s what happened, taking out the Endo and stitching back.

[Highlandgoat in reply to Micasmum]

Hope you’re feeling ok after the op.

I’ve been told endo in the bowel is also severe but I thankfully gave no bowel symptoms.

If you don’t mind we asking- did you have a stoma bag?

Thanks

[Micasmum in reply to Highlandgoat]

it’s not been an easy recovery for me but peoples experience are different. No I did not have stoma bag..

Did they say u will have or may have ? Cause I was told that I may have it and I ddnt. It’s in rare cases xx

[Highlandgoat in reply to Micasmum]

Sorry to hear it’s not been easy for you, hoping that things improve.

Yes, they’ve told me I may have a stoma and it scares me so much. It’s why I’ve reached out to hear others experiences to help me make a decision, I get everyone is different but just having a better understanding would be good.

Thanks

[Ess1982 in reply to Highlandgoat]

hello Highlandgoat, I'm in the same position as you. I don't have bowel symptoms however mri suggested endo in bowel so my surgery may also involve bowel resection. They have warmed me about all sorts and I'm terrified. Seeing the stoma nurses in a couple of weeks. I'm having full hysterectomy and as I've also had a recurrent infection for nearly 2 months I have been warned there is a chance I may require abdominal surgery. I just tell myself it's out of my hands. Trying my best to think positive and eat a high protein diet before surgery. Wishing you all the best.. you're not alone xxx

[Highlandgoat in reply to Ess1982]

thank you for sharing! It’s very scary when they start going through things. I totally get they have to make you aware of everything but it is terrifying.

I’m seeing the stoma nurse in a couple of weeks as well, for a counselling session, is what they’ve called it.

Reading these is making me more positive about things

Wishing you also the best and speedy recovery xx

[Starry1977]

Hi your diagnosis sounds exactly like mine.ive decided not to go for hysterectomy as the bowel involvement frightens me to death and also early menopause. I'm trying the minipill but noriday which is a different to the one you tried.

[Highlandgoat in reply to Starry1977]

Hiya, I’m terrified as well. Hoping that others like us can advise how they’re doing now and help me make a decision.

I’ve been told they maybe able to scrape the endo from the bowel but as it’s so severe they may need to do more. I’ve got no bowel symptoms so hoping it will be possible but need to be prepared if not.

It’s the not knowing until to wake that scares me! I’ve got my head around the menopause bit as I think I’m peri anyway.

Not come across what you’re on but I’ll mention it to the doc and see what they say.

Take care

[Ess1982 in reply to Starry1977]

will the mini pill stop the endo 'multiplying?' I'm also on the mini pill whilst awaiting surgery. I find I'm still having 'endo psin' in particular my ovarian cysts xx

[Starry1977 in reply to Ess1982]

I think the theory is progesterone is supposed to thin the lining so therefore bleed less, but I could be wrong. I also have pan in my ovary where there are cysts but I’ve only been on it 3 week so a bit early to see if it’s helping.

[V-Cross]

Hi Highlandgoat I am 7 months post hysterectomy with bowel surgery, same as yourself I was told before surgery there was the possibility of a stoma as the endo had tethered my womb to my bowel and I had additional bowel endo (as well as everywhere else pretty much) but all surgery was completed successfully without the need for a stoma and due to my age (35) they managed to save my ovaries too so I wouldn't have to go through early menopause. I've also had Noriday but that was only by chance as sadly I wasn't aware I had endo at the time I was prescribed it so my endo was already too advanced for it to really help but was definitely one of the better pills I've had x

[Highlandgoat in reply to V-Cross]

Thank you for coming back to me. It’s good to hear your outcome and agree you sound very similar to me.

I think the Noriday might be too late for me and I’m older than you (45) and know I’ll loose my ovaries, which I have come to terms with.

Sounds really positive and I hope you’re recovering well 😊

[Bubble41]

Good Morning.I had obliterated pouch of douglas and endo on my bowel. I had lap and hysterectomy on the 6th of September.

Fortunately the endo wasn't to deep on the bowel, so they shaved it off without having to do a resection.

I had a scan done privately back in August which showed exactly how bad the endo was. I beleave the NHS don't always have the high quality scans or the doctors with the correct knowledge to identify the endo. If you possibly can I'd advise a private scan with a specialist.

I had my first lap back in February with the NHS and unfortunately as they weren't armed with the correct knowledge they just made the situation worse. Had I have gone private in the beginning i would have likely only needed one surgery.

I was still warned a bag may be necessary for a while, but thankfully it wasn't.

Menopause so far has been fine. I'm on combined HRT. Patches and pills. You will combined as the progestron stops any sneaky left over endo from growing. My GP didn't know this so I had to put her in touch with my surgeon before she would prescribe it.

I wish you the best of luck. Make sure you ask all the questions you have.

When are you booked in?

[Highlandgoat in reply to Bubble41]

Thank you Bubble41 for messaging.

It’s hard to know what’s best. I did actually go private once my appointment was postponed for the 4th time but I didn’t feel reassured by them at all. Thankfully my NHS hospital is a endo specialist unit so feel much more in the right hands.

I’m seeing the stoma nurse in a couple weeks with the op due Dec/Jan all being well. Brilliant to hear you haven’t needed the bag, I’m wishing that’s also the case for me.

HRT I’m not worrying about, it’ll be what it is but that’s for the heads up on the combination. I’ll defo make a note.

Take care

[IB15]

In the same boat, waiting for an appointment with colorectal. My MRI shows a rectovaginal nodule which has penetrated my bowel and my womb is also adhered to my bowel. I am absolutely terrified, I am 27. I do suffer with bowel symptoms but they are managed quite well on the pill. I am desperate for a family and the thought of the bowel op makes me burst into tears every time I think about it, which is all the time. It's a rock and a hard place decision whether to have it or not. Any positive experiences would be so welcome. ]

Sending anyone suffering love x

[Highlandgoat in reply to IB15]

It’s really a hard decision to make! I’m hoping these treats help you, I needed to hear what others had gone through.

I’m so sorry you’re struggling with it. Has the doctor been able to give any advise?

You’re not on your own, everyone on her knows what you’re feeling and the pain mentally and physical we have.

take care lovely xx

[IB15 in reply to Highlandgoat]

Thank you so much for your reply.

I have an appointment soon so hopefully will be able to discuss options then, it just seems as though there aren't many options!

Thank you for your kind words, I really hope you get the treatments and help you need as well xx

[PDB2022]

I had surgery for stage 4 endo last year and was told beforehand I likely needed a bowel resection due to the severity of the bowel involvement.

Before the surgery I went to see the nurse who measured and marked my stomach in the event a stoma was needed but she told me 9 times out of 10 she never sees patients again.

It was an extensive surgery for me and I did end up with the bowel resection but on waking the surgeon told me straight away I did not have a stoma! Recovery was fairly straightforward after that and looking back while I was so nervous, I’m so glad I went through with it.

I hope this brings you some kind of comfort and reassurance. Thinking of you and wishing you all the best x