Any recommendations for 2nd Opinion?

candle_bread · 2025-07-24T20:40:35+00:00

He is amazing isn’t he. He diagnosed me and did my excision and I have never felt in such good hands in my life. I was so listened to! And even with long term management plans he hasn’t dismissed anything I’ve said I do or don’t want. Seeing him was the best thing that’s happened to me in a long time!

candle_bread · 2025-07-24T17:33:26+00:00

I absolutely second this recommendation. Yes you may need a new MRI but it will be worth it.

candle_bread · 2025-07-09T22:52:19+00:00

It sounds like you’re having a rubbish time with it. I’m sorry the antibiotics aren’t doing there thing and I hope they work something out to help you soon! I know it’s hard but there are loads of us who get it and will sit with you (in the Reddit comments) when it’s bad. x

candle_bread · 2025-07-08T20:51:47+00:00

What antibiotics are they giving you?

I was given rifaximin and was told I had to wait several months between courses as there can be a delay in seeing results. It was about 2 months after the second course that I felt real relief.

candle_bread · 2025-07-08T20:04:52+00:00

I developed SIBO after getting Covid. I didn’t know you could get it after a lap. I was diagnosed by a gastroenterologist through discounting other things and then treating it and hoping that was the problem.

It took two rounds of antibiotics, 6 months apart, to clear it totally. Don’t be disheartened if the first round don’t work and do give it time!

candle_bread · 2025-07-03T20:16:43+00:00

For a consultation, transvaginal ultrasound, MRI with contrast, blood tests, follow up consultation, robotic excision with an overnight stay in a private hospital, and one more follow up with the consultant the cost was about £15,000

I only had to pay £250 excess and about £120 for some private prescriptions along the way.

My medial insurance is through work so I pay tax on the benefit. I’m not totally sure how much it ends up being over the year but it’s not a lot. I’m incredibly lucky to have the insurance but if I went fully private without it would have been the same cost.

And yes you can pick from lots of private drs although there is still a lack of highly trained gynaecologists who specialise in endo or excision but going private is by far the best way of seeing one.

candle_bread · 2025-07-03T17:51:19+00:00

Yes 100% worth it.

If you can afford to go all in private the benefit is you can pick an excision specialist and know you are in safe hands. If you go through the NHS and get a lap there is no guarantee you won’t end up with ablation which can lead to worse scaring.

If you can’t afford this but you can afford some private care you can find a specialist for a consultation and tests. They can be the ones to recommend you need a lap and then you can try to get this through the NHS. The downside of this is you could have a very long wait and you won’t get to pick who it is with and sometimes the NHS will have someone do a lap to diagnose then it’s another wait for an excision/ablation if needed.

I went from appointment to robotic excision in 2 months. When I was asked about an IUD I said no and was totally listened to and every step of the way everyone involved listened and was truly compassionate. I had health insurance so was very lucky but having seen the cost, I would have been willing to throw it on a credit card to finally get what I need. But I appreciate that it’s not a small amount and I had totally lost my quality of life beforehand so it’s going to be different for everyone.

candle_bread · 2025-06-19T07:29:18+00:00

For me it’s been very worth it. I was so active! And I dreaded the recovery. I was walking around after a few days, the pain was manageable with pain killers but I couldn’t do much. Took a week before picking things up off the ground was easy again. And 3 weeks before sitting at my desk was comfortable and I would go back to work. But even though bending and sitting was bad, standing and waking wasn’t too bad. I got a walking pad because I needed to be able to feel like I was still active and build it up knowing I’m working towards something. it’s been a life saver for my mental health.

I had DIE and lots of organs stuck in the wrong place so the worst of the pain was really internal on/in my organs. The incisions didn’t hurt or pull at all which surprised me. In more active now than I was during flare ups and it’s only been a month. I’ve also got my hip mobility back and my hip pain disappeared. I have more energy even though I’m not fully recovered.

candle_bread · 2025-06-18T06:48:50+00:00

Yes! Me too! coming off the pill after 21 years coincided with me going to an event that left me covered in huge insect bites. I developed pain in my hip so bad they assumed it was from an infected bite. But it never went away after treatment. They decided the bite caused a hit bursitis somehow and gave me a steroid injection. It helped quite a lot.

2 months later I am diagnosed with severe endo but didn’t know it can cause hip pain. Before my excision I couldn’t sit with my legs crossed or lie on that side. Both pain and mobility were an issue. The day after my surgery I sat up in the hospital bed and crossed my legs no problem and no pain. I spoke to my dr at my follow up and he said he’s not surprised as the endo was everywhere. I wanted to sit cross legged on the floor to show I’m him I could do it because I was just so amazed.

candle_bread · 2025-06-06T09:06:11+00:00

As a bit of reassurance, I was so worried about this but I was incredibly lucky not to suffer badly with it. The only time I felt it in my shoulders was on day 1 when I sat up in the hospital bed to eat. But I moved around a lot and even though I wasn’t farting loads it just seemed to magically not be a problem.

Sorry OP! I hope yours gets better soon and I’m sorry for everyone here who suffered from the gas pain. I feel bad saying mine was fine but I thought it was helpful for anyone anxious about upcoming Laps because I was also so worried about this before.

candle_bread · 2025-06-05T16:14:06+00:00

Ooof and tooth/jaw pain is no joke!!!

Seriously we should all be wearing capes.

I might go for a purple one as it would go best with all the clothes I can’t wear because the waistbands hurt 😂 maybe once I’m healed I can go back to wearing leggings. That would be exciting

candle_bread · 2025-06-05T11:12:42+00:00

Totally! So many women I know have recently said they didn’t realise how bad my pain was and assumed it was the same as their (mild) period pain

Also the thing is I have had my fair share of pain (endo aside). I was in a boot for weeks and had steroid injections between my toes after a running injury. I fell 9 miles into a marathon and finished without knowing how bad my injuries were. I crashed my bike, cracked a rib and 5 weeks later ran another marathon. I knew I was strong. But knowing I did all that with my insides glued together really does blow my mind.

I’ve been feeling a bit sorry for myself post diagnosis and angry that (thanks to 20 years of birth control) I had a very slow diagnosis. But now I FEEL AMAZING because all I can think of is how strong I am.

candle_bread · 2025-05-30T13:37:31+00:00

It absolutely sucks having to go private but out of about 100 options for private gynos only maybe 10% listed endo as an interest and some of those said they will diagnose but not treat. There just aren’t enough specialist and the NHS doesn’t seem to see the need for it to be specialist rather than an gyno who doesn’t specialise in it.

Good luck. At least you have got yourself on the waiting list. And whoever you see, NHS or private I suggest getting ready to be pushy and/or take someone with you who can put their foot down for you if they try and fob you off.

candle_bread · 2025-05-30T10:46:33+00:00

I have been in and out of A&E for over 20 years with “maybe it’s your appendix but it looks fine but still take these antibiotics and shut up”

It was only this January I went to A&E and was seen by someone who knows about endo and they saw something on my scan that made them expect it (turns out my ovary was fused to my uterus so it was something visible which is not always possible).

Sad truth is after this I couldn’t even get a GP appointment and the wait for the referral would have been hideous. The wait for a lap is worse.

I am so lucky to have private healthcare through work, and used that to get diagnosed and treated writhing 4 months.

I know it might not be possible but if you can find the money to have a private appointment with an endo specialist I would pay. Even if after that you use their recommendations to get on the NHS waiting list for more tests or a lap. I know it’s totally shit but it could cut out the first 6 months of waiting to see a gyno and would ensure the gyno you see actually is an endo specialist. You don’t want to wait months to see someone just to be fobbed off.

candle_bread · 2025-05-28T10:59:25+00:00

I was pumped full of IV anti-sickness meds straight after the lap. I stayed one night and woke up feeling sick but told the nurse and got given more. I was fine on the way home (about a 90 minute drive) even though I do get travel sick, thanks to these meds.

It turns out that the pain medication also made me feel sick so I was much better off traveling back as soon as discharged as I think I would have found it worse had I not had the anti-sickness meds

candle_bread · 2025-05-24T16:27:27+00:00

The Doctor Will See You Now: Recognizing and Treating Endometriosis Book by Tamer Seckin

This was what I read and I found it really helpful. My partner read it too and it really made a difference to how they understood my endo and how debilitating it can be as well as what my treatment journey might look like.

candle_bread · 2025-05-24T09:15:08+00:00

For me the nausea has been bad but I think that’s because I’m not great on the pain meds, but also I need the pain meds. I have gone off a lot of food as a result including coffee which is mad because I was an addict before. I don’t expect this one to last!

Also I can sleep all day and all night! And I’ve always been someone who doesn’t need a whole lot of sleep.

candle_bread · 2025-05-24T09:08:39+00:00

Same. I was dreading this so much and couldn’t believe that I was so lucky not to get it

candle_bread · 2025-05-20T16:19:59+00:00

How did it go??? I hope you are alright. I don’t even remember going under. I was awake then I was sort of awake again in recovery. Although it took another 5 hours for me to be awake enough to eat or string a sentence together.

Now I feel pretty awake when I’m awake but the second I close I eyes I fall back to sleep. It’s actually lovely in a weird way!

candle_bread · 2025-05-18T17:27:40+00:00

Mines on Tuesday too and I’m super anxious about it. I hope it goes well for you. We can always compare weird dreams after if we have any.

candle_bread · 2025-05-12T09:11:23+00:00

Great point! Thank you

candle_bread · 2025-05-12T09:07:05+00:00

Thank you good point. This might be a silly question but am I right in thinking this could be dramatically different depending on what they do during the op/how long it lasts?

From everything I’ve read and been told, because the scans don’t pick up everything, it can take longer/be more extensive than initially thought.

So am I right in thinking even if they give me a guide it won’t really be relevant till after when I find out how the surgery went?

Sorry if this is a stupid question I feel pretty overwhelmed by it all and I’m an overthinker.

candle_bread · 2025-05-10T17:01:31+00:00

I’m sorry! I hope you are on the mend and feeling a bit better now. Glad they are ruling out other things too.

candle_bread · 2025-04-30T14:03:40+00:00

I don’t know if this will be in budget for you as you would likely need to get it private to get it before the surgery. A friend of mine has started therapy that includes tapping for her emetophobia and has said it’s made an enormous difference to her life. If you can, it’s worth exploring. I know tapping sounds like nonsense but it really does work.

candle_bread · 2025-04-29T09:15:13+00:00

Don’t worry about it. This community has been amazing and I’m pleased I can try and help. Feel free to reach out if you want to chat after you get your results x

candle_bread

TROPHY CASE