Before second lap - Endo/IBS: Hi there, I... - Endometriosis UK

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Before second lap - Endo/IBS

rubysoho
rubysoho

Hi there,

I was hoping to get some advice/support from you ladies, apologies in advance for the long post! I had an appointment with my endo specialist yesterday and my head is spinning. About 4 years ago I had a lap after 7 years of pain and they found cysts, endometriosis in the pouch of douglas and adhesions. In the last year my symptoms have returned, not as bad as they were - but I don't want to get to the stage where I'm being taken to hospital/passing out from pain every time I have a period again, so I've insisted on being seen now.

In the last 4 years since my last lap I've felt better but now I'm getting throbbing/stabbing pains in the POD area again, I can 'feel' that my cyst on my left ovary is back and I get terrible pain the week before, during and after my period. In addition to this I've also got terrible fatigue and joint pain which has begun to affect me every day. I thought these were all classic endo symptoms.

Although my consultant referred me for a second lap, he seems to think I don't have endometriosis (which seems odd to me as I thought it was something that wasn't curable - I've had it surgically diagnosed before) and it's just IBS. He also suggested that feeling better after my last surgery might have been a 'placebo' effect and my pain has always been IBS. I don't really have any symptoms of IBS (just bloating) and I'm gluten-free and mostly dairy free anyway. He also thinks my joint pain and fatigue is completely unrelated. I felt like he was trying to counsel me away from surgery, but he said he was just outlining the risks. I am so confused as I previously have had endo/cysts/adhesions and I'm experiencing the same pain again - the only difference is that I'm now on Microgynon. I've heard of GP's misdiagnosing endo as IBS, but this is an accredited endo specialist so I'm not sure what to think.

I know that the lap I'm on the waiting list for will show once and for all whether I have endo, but I feel like I'm doubting myself. Am I having unnecessary surgery?

Also does anyone have any advice on whether I should I see someone separately about the joint pain and fatigue if my endo specialist thinks its completely unrelated?

Any advice would be really appreciated. Thank you so much!

7 Replies
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I feel your pain! I’m due my second laparoscopy on the 14th.

I only had the first one a year ago cauterising endo in POD. I’ve been suffering with symptoms again including bladder pain this time.

Again, the gyne said it could be IBS but I don’t see why that would effect my bladder.

So anyway, this time they are going to remove the endo properly to see if that helps. But I also worry I’m having s pointless op as I have been made doubt myself!

Like you said it isn’t curable so I’d assume there would be some return in 4 Years anyway? I’d say go with your instinct xx

rubysoho
rubysoho in reply to Louby84

Thanks so much for your reply, I'm sorry to hear that you're going through something similar, I hope your second lap helps. I can't see how bladder or IBS could be related either.

My instinct says that it's similar symptoms so likely the same problem. Thanks for the reassurance! It's so hard to stick to your guns when the validity of your pain is being questioned, I'm grateful we have this forum :) thank you for your advice xx

Glad you’re under a endo specialist that’s good.

My story is different to yours but one thing we have in common is some of my endo is also located in pod ; I have had 2 laps within 8 months. (After my first lap I conceived but miscarried after ttc for nearly 6 years) My endo returned again in pod and again some was left on my rectum 🤢 anyway because of that and I have symptomatic endo ( means I’m prone to recurrence 🤦🏼‍♀️) I’ve been referred to a endometriosis specialist that my fertility specialist knows 😀 Like yourself I have many bowel issues; mine are caused by endo growing on my bowel 🤢

I’d go with your gut instincts; trust you know your own body better than any doctor 😊 Definitely go ahead with the lap ; you need a proper diagnosis . Good luck xoxo

rubysoho
rubysoho in reply to jess1981

Thank you so much for the advice to go ahead with the lap. Its great to get some reassurance that it's the right thing to do - even just get get a proper assessment of what I'm working with.

Thank you for sharing your experience with me, I'm so sorry to hear you've been having such a tough time. I wish you all the best with your endo and fertility treatment, best of luck to you too xx

Hi I'm new to the site, but I would say go with your gut feeling as nobody knows your body more than you! There's nothing more frustrating than not knowing and doubting yourself.

I had endo removed from my abdominal wall in 2009 and got referred to a bowel specialist, who has since had to do a ventral rectoplexy to repair an rectocele and entrocele thinking that this was also the problem. I then got diagnosed with IBS Chronic constipation. However, I have been suffering with severe pain on my left side, always same place and not very often get a day without pain, fatigue muscle and joint pain. I seen gyny and decided not to have op last year, due to having previous ops and being scared in case it went wrong, but have come to the point were I feel I have no choice and seeing gyny on Thursday.

Question I ask myself is it Endo, Adhesions from previous Op's or if the mesh used has eroded and causing problems, does anyone else have similar issues... feel so down and try to get through each day, but it's so hard to do.

rubysoho
rubysoho in reply to Tracey26

Thank you for the kind words and encouragement, my gut feeling is something needs fixing so I'm so glad I said yes to the second lap - whatever it finds.

It sounds as though you should benefit from seeing a Gyny as well as the areas are so closely related. I really hope that they can shed some light on your situation, it's so awful to be living with 24/7 pain and fatigue. I hope they manage to help you identify what the issue is so that you can begin a recovery xx

Hopefully we will both get sorted soon.

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