First lap and no endo! :(

[NJG_98]

So I had my first laparoscopy today, I'm just waiting to be discharged.. they found no endo.

I feel so disappointment and angry, I know I am LUCKY beyond lucky not to have the horrible disease but HOW AND WHY is there no explanation for 6 years of crippling agonising pain resulting in me in a&e begging for pain relief, admitted to hospital...

They gave me the images even though they weren't meant to but I've just moved to 3 hours away from the hospital ... so consultant said was fine to photocopy the images...

what should I do next? They said pelvic pain clinic... I want MRI or CT, the pain is NOT in my head and I've just had a laparoscopy and Anaesthetic for nothing?!?!

I am grateful I don't have the condition but just so angry there's no answer for my pain!!!

[Hidden]

I am sure they have checked and found you haven't got this but I just wondered if they mentioned adenomyosis which can be difficult to diagnose? Mine didn't show up on an ultrasound, they just noticed that my uterus was enlarged and looked like it had adeno when doing a lap. This can cause severe pain and occur without endometriosis present.

[NJG_98 in reply to Hidden]

They said everything normal.. no mention of adenonyosis they just said go to pelvic pain clinic and off you go basically... and that I have normal tubes and ovaries etc apart from PCOS but that doesn't cause pain

[Hidden in reply to NJG_98]

You might want to look into adeno if the pelvic pain clinic is unable to help you. I think it is possibly sometimes missed on a lap but I am not an expert.

[NJG_98 in reply to Hidden]

I'm going to be seeing the GP where I've relocated to and I'm going to ask the next steps. I have my detailed notes and images from today's laparoscopy so they should be able to help as I don't want more ops, I am going to research into adeno though, thank you! xx

[Arlene2205]

I feel your pain I have had two lap's and 1st one they told me I had endo and second one I don't have it I'm confused beyond!! I have been in terrible pain 4 over 14 years it's crap really!!

[NJG_98 in reply to Arlene2205]

What the hell. How do you have it and then not have it?!? They need to sort you out and get you some help! Hope it's sorted soon lovely , it's shit being in so much pain and agony! Xx

[Hidden]

Oh no, I'm so sorry. You must feel incredibly frustrated. Were you seen at a specialist centre? My GP sent me for an MRI initially, so perhaps this is something that your new one may be willing to do. It would be worth looking into adenomyosis although mine never showed up on u/s or MRI, only during a lap. It's difficult to diagnose. I have endo but after talking to my consultant and focusing on the actual pain, I think my uterus is the cause of most of my pain. Contraction type pains and pain near the public bone are two giveaways apparently. X

[NJG_98 in reply to Hidden]

Hello, I was seen at normal hospital. JR in oxford, GP sent for US which showed PCOS nothing else. Referred to gyn straight for lap, the drs said lap has shown nothing at all, given me full report and images, no biopsies or anything. Oh wow , maybe I have similar problem. I get sharp pulsating pains or just very dull pain around public bone so I have no idea just want it to go away!! I am so fed up of going back and forth not getting anywhere now x

[Hidden in reply to NJG_98]

The JR has a bsge centre. I wonder if you were seen by a specialist or if it's worth getting a second opinion from someone who definitely is. You can check on the website to see if your consultant is named bsge.org.uk.

I got to 41 before I got a diagnosis!! It's a long old road. You'll get there. Don't give up 😘! X

[NJG_98 in reply to Hidden]

Thank you I'll have a look!!

Gosh. It feels like it takes forever, I'm so young that I just want answers so I know if I can start a family or not in the near future.. I don't want to fight for 20+ years you know, I really do feel sorry for those who've had to though. I'm glad you finally got one, I'm trying hard not to give up. Fighting on 💪🏼 Xxx

[Catlover93]

Same thing happened to me hun. My first lap was performed by a general gynaecologist and until I demanded for a second opinion with someone who specialised in endo I finally got the diagnosis. I know it's very upsetting because you want an answer to your pain, and I had every symptom. But it is your right to have a second opinion if you would feel better doing so. Good luck hun I hope you get some answers soon. Xxx

[NJG_98 in reply to Catlover93]

Sorry to hear this, thank you, did you get second opinion at bsge? Xx

[mollymm in reply to NJG_98]

Hi honey. The JR does have a BSGE centre but not a BSGE endometriosis centre I believe. A BSGE centre is unlikely to be any more helpful than a normal hospital if it doesn't have a specialist endometriosis centre. You need someone who works on endo all day everyday. The two things (BSGE and BSGE endometriosis centre) are often confused. It might be worth looking on the BSGE website and finding your nearest endometriosis centre then paying to see the consultant privately with your photos. It's usually about £200 for s consultation. I know it's a lot of money, but if you can do it it'd be worth it. I've got stage 4 endo - a lot of damage to organs and it took me months to be seen on the NHS after my last op, even though they knew the damage was severe and getting worse all the time. I had 1 private consultation to speed things up which meant that the wait for my op to repair my organs was 10 months where it would have been 12 at least. It was difficult to find the money at the time but definitely worth it in the long run.

[NJG_98 in reply to mollymm]

Thank you so much, I will definitely look into this as I'm clueless with it all and wouldn't of known the difference, I think £200 would be worth it for at least some answers but I'm going to try other things first before resorting to paying out for consultations etc because if it does turn out to be nothing then I'd be even more frustrated! Hope your okay it sounds like an awfully long and stressful time for you! Take it easy xxx

[Letishareidxo]

Similar experience sweet just over two months ago. Ask them to explain as much as they can and see what kind of surgon did your surgery (specialist or not). Keep pushing and don't give up hope I had horendous pain and they were also looking for endo and they found nothing. But we know our bodies. They are giving there one professional opinion and were giving our personal painful one but try and get a second opinion I am!

Keep trying and keep asking for follow up appointments and what there plans are with ongoing pain and if you could manage it. It's sad everything is so slow and works in baby steps with them definitly makes you feel vicitimsed.. Hope you feel better soon x

[NJG_98 in reply to Letishareidxo]

Thank you! They explain in detail and gave me all my op notes and images I am not sure I'm meant to have them actually... but I live far away so they let me under this circumstances . I think it was a specialist surgeon that's what the nurse said, ill call tomorrow and double check.

I will definitely push for second opinion and further tests like Mri as I know this isn't normal and not for 6 years. I definitely do feel hopeless and victimised at the moment.

Hope you get some answers too lovely, it really does feel like at a dead end.. xx

[Hidden in reply to NJG_98]

be careful with who reads your MRI result as I have heard that non-specialist are not able to see endo on MRI, keep in mind it is not a giant tumor which would be obvious

[NJG_98 in reply to Hidden]

Of course, I've worked in the radiology department so I know who I need to read my scans, thank you lovely x

[Hidden]

There's a possibility they missed the endo from what I read there a like 5 different kinds. Did they take anything for biopsy?

You could go to a bowel speacilsit if you haven't yet and check for a bowel disease such as chrons of colitis. Or maybe it's Intersestinal cystitis.

I saw a gyn on Monday and he said "You have chronic pelvic pain I'm not doing a lap" and gave me numbing cream, it hasn't worked niether has physio. Really drs need to figure things out.

Endo can even hide under scar tissue if inactive (Bc pill) and it'll just blend in to the rest of the abdo.

[NJG_98 in reply to Hidden]

Hi I didn't have any biopsies and have no scar tissue apparently, which makes sense as never had lap before. I've only been on the pill since June/July had chronic pains for 6 years , wouldn't cystitis show up on urine tests? And for 6 years seems extreme.. haven't been checked for any bowel conditions but will raise it to the GP as I'm just desperate for answers now

[Hidden in reply to NJG_98]

I think they need to put a camera in your urethra for IC.

[NJG_98 in reply to Hidden]

Hmm will see what docs have to say!

[Hidden in reply to NJG_98]

Don't listen to 'Chronic Pelvic pain' unless if you've fallen on something and broke a bone there or got in an accident. That's just drs being extra lazy

[NJG_98 in reply to Hidden]

The pain is very severe most of the time but yes they're saying to go to pelvic pain clinic for "chronic pelvic pain" and I'm like ??? What they gonna do there give me more pills

[Hidden in reply to NJG_98]

They might work on physiotherapy or give you more pills or cream but there's definitely something going on.

Did they check you white blood count?

Since you have a history of cancer they should really make sure you didn't get another kind but it's very rare.

Where does it hurt?

IC hurts in the bladder from what I've read.

[NJG_98 in reply to Hidden]

I have my bloods checked regularly so it's not cancer , and it's usually the lumbar spine , all around my lower abdomen, hips, pelvic and pubic bone that I get pain. It's usually sharp and can be a pulsating worsening pain but some days very dull pain around pelvis and sharp pain around lumbar spine so it's difficult to explain!

[Hidden in reply to NJG_98]

Have you had an MRI to check for a small curve in the spine?

When I 1st got scoliosis mine didn't show up on X-rays I just had nagging back pain and then it went from a straight back to 27 degrees.

Have they checked for a slipped disk?

[NJG_98 in reply to Hidden]

Nope gp convinced I have muscle pain in my back and to take naproxen... such an idiot... he had the prescription ready on screen basically before I even sat down and told him what was wrong.. saw me within 3 mins too. He just sent me away with naproxen said can refer me to physiotherapist but waiting list 6 months, no point as relocating .. I'm going to mention everything to my new GP and I will ask for referral for MRI Spine Lumbar and MRI Pelvis .. what's the harm in asking all they can do is say no

[Hidden in reply to NJG_98]

If they say no to MRI ask for X-ray it may show a curve, there's also the bend over trick where they just check your back.

[NJG_98 in reply to Hidden]

Yeah flexsion extension, I'll deffo ask them as I've worked in radiology!

[Hidden in reply to Hidden]

My mum had pain in her lower back and legs that started last year and then while in physiotherapy her back started to curve.

I still think there may be a chance of endo or adenomyosis.

[NJG_98 in reply to Hidden]

I have quite a curvy structure to my back but my back has never been much of an issue other than the cancer I had when I was younger. I'm definitely considering physio when I move to my new home permanently to get to the bottom of it, my main concern is the pelvic pain which has been for 6 years

[Hidden in reply to NJG_98]

How does it curve? To the left/right

Do you have a hip that sticks out? Shorter leg?

If it's just a taller shoulder then it's thoracic like me and it woudlny cause pelvic pain.

But if a hip or leg is short your spine could be at your abdomen and lumbar area. I wonder if we have a scoliosis support thread...

[Hidden in reply to Hidden]

B/c I have a minor curve but it gave me headaches and an inability to lift anything.

[NJG_98 in reply to Hidden]

Yes omg I can't lift heavy things without my back numbing and pretty much locking up and causing me great pain and I can't even hoover or anything

[Hidden in reply to NJG_98]

Yup that's a sign of scoliosis. Xx

Hopefully you can correct it with phyiso

[NJG_98 in reply to Hidden]

Hmm I'm not too sure it's just quite curved I've always thought to the middle but I'd say more towards the right perhaps.. I will have to check! I don't believe I have one leg shorted than the other, and I'm not too sure about my hips sticking out as I've never noticed that at all, or even bothered to look so I'd say probably not, hmm I'll have to have a look around I'm sure there will be one. Definitely going to be pestering the docs with questions now!

[Hidden in reply to NJG_98]

If it's to the right and you find you'd ont have a waist that's also a sign since your waist will completely go crazy from what I've heard in my case I can only tell from ribs.

Maybe you have an S bend (it goes back and forth)

[Adhamilton]

Dear of you!! How are you feeling after ur lap tho x

[NJG_98 in reply to Adhamilton]

I feel okay just frustrated and in pain from the gas and the actual procedure.. in bed at home resting now. Can barely walk haha fun week this will be x

[RiaLac]

I'm so sorry you are undiagnosed the JR is a BSGE centre so I'd imagine they checked for adeno too, but call and ask them for the op notes. Asking for an MRI could be a good shout, it may show something up that they couldn't see. How are you feeling? Xx

[NJG_98 in reply to RiaLac]

I have the op notes and images at home , they gave them to me in full detail that only the dr should have, so I have no idea what to do?

and WHAT!!! I never knew the JR is a bsge centre , now I feel silly. I'm asking for CT KUB or MRI pelvis .. I feel okay apart from pain , can barely walk and getting irritated as I hate lying / sitting for too long! Xx

[RiaLac in reply to NJG_98]

Sending you a huge hug! Recovery is rubbish and even worse when you're left without answers.

Can you ask for a post op meeting with your consultant to ask for advice on what to do next? Xx

[NJG_98 in reply to RiaLac]

The problem is living so far away it is really hard to do this, my consultant didn't see me today it was someone else who advised pelvic pain clinic which I'd of been referred to at Jr but because not going to live here they haven't referred me and just discharged me from Gynaes care... going to have to strt from squares one in Cardiff! Xx

[RiaLac in reply to NJG_98]

Cardiff has a BSGE centre too! Ask to be transferred there and ask to see the pelvic pain clinic, they maybe able to help? Xxx

[NJG_98 in reply to RiaLac]

Yes I'm going to do this as soon as I'm back, I'll request for everything to be transferred from oxford like GP notes etc. The advantage is I have the detailed op notes and the pic so I can go to anyone now without having to wait for them to request it all! Xx

[Sunshine91]

Sorry to hear you have no diagnosis 😞 I hope you are feeling ok as can be after the op. Xx

[NJG_98 in reply to Sunshine91]

Thank you I'm doing really well besides the tummy pain xx

[Sunshine91 in reply to NJG_98]

I do hope you get to the bottom of your pain. There must be a reason for it. xx

[NJG_98 in reply to Sunshine91]

I will even if I have to go private just to get a scan or something, it's ridiculous and want answers as can't live on medication forever not this young anyway.. ahhhh well, hope you're having a pain free day xx

[attummi1973]

hi lovely, glad to hear you don,t have endo,but sorry you don't have any answers. keep plugging away with the GP,until they find out whats wrong, don't give up. Hope you feel better soon from the lap,rest lots.

big hug x

[NJG_98 in reply to attummi1973]

Thank you, it's just so frustrating but now time to get back on track, big hugs to you too xx

[Hidden]

Ohhh sorry to hear what you went through. Do you know if they checked behind the uterus I heard it is a common place to be missed! x

[NJG_98 in reply to Hidden]

Ermmm I'm not too sure if they did? They checked the liver the folds etc and my op note says normal sized anteverted uterus xx

[Hidden in reply to NJG_98]

hmmm, interesting, because a lot of us ladies have retroverted uterus including myself because it is pulled back by endo behind the uterus.

[NJG_98 in reply to Hidden]

So is annoverted not normal? I can check with the docs and GP just I'm home now which is tricky. X

[Hidden in reply to NJG_98]

Does any one in your family have one? I've heard in some cases that some ladied are born with a retroverted and annoverted uterus with no Know cause.

[NJG_98 in reply to Hidden]

I don't know I don't really have anything to do with them apart from my mum which is normal , I think she has retroverted but not too sure. If it was a problem the DR would have told me surely