No endo found : Girls I feel so lost. On... - Endometriosis UK

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No endo found

Bex23007 profile image

Girls I feel so lost. On Thursday I had my laparoscopy, they didn't find anything. They tried to send me home without telling me anything other than they didn't find anything and I could be discharged so I said I needed to know more as they did a hysteroscopy and fitted a coil but last I knew was they didn't think I could have a coil because my uterus is retroverted and heart shaped (which the notes state) So I waited and the surgeon (who wasn't the consultant on my paperwork) just said they didn't find anything but one of my ovaries was stuck (the right one but it's the left side that causes me the daily pain) and the notes don't say anything about that other than tearing?! I've got no pain relief to go home with they gave me codeine but the notes just say paracetamol and ibuprofen but my preop they told me morphine. I feel like I've taken so many steps back 😭 obviously if I don't have endo that's great but all my symptoms pointed to it and I'm worried that the pain will return 😩😩 the doc has given me some codeine as I can't sit up (think it's the coil insertion as it's very cramp like pains)

Any advice would be appreciated. X

27 Replies

Oh sweetie I'm so so sorry you've been left like that, sounds to me like a gynecologist who isn't a specialist has been the one who examined you? Especially given your ovary is stuck! That's a big clue! Are you possibly in a position to get a private appointment with a proper BSGE registered endometriosis specialist? That is your best bet, get a second opinion. Xxx

Bex23007 profile image
Bex23007 in reply to CryBaby91

Yeah they are a normal gynaecologist by the looks of it and not the consultant I had my phone appts with. I think it'd be worth saving for a private appt, so if the pain doesn't stop I'll go down that route if it gets me some answers. Thank you. X

CryBaby91 profile image
CryBaby91 in reply to Bex23007

Yeah basic gynecologists have a reputation for missing things! Sadly! They just don't have the expertise compared to a proper specialist, and endo is so poorly understood that it's overlooked all the time. I saw a BSGE registered guy this week and he was amazing, I've spent 10 years being ignored and he listened straight away. Definitively recommend it if it's an option for you, or try get your GP to refer you to a specialist straight away on the NHS? If you're having symptoms on your bladder and/or other places like the colon then you should be referred to one according to NICE guidelines anyway xxx

Bex23007 profile image
Bex23007 in reply to CryBaby91

Ah that's good! I'm glad you're finally getting listened to! My GP is a bit hit and miss so I think it'll be worth paying for the initial consultation and then hopefully I can be referred under the NHS. Thank you so much for your advice xx

Hi Bex sorry you didn’t get many answers. I paid privately for a consultation with a BSGE doctor/surgeon which cost £200. They then put me back on the NHS waiting list for surgery. Have you had an MRI to check for adenomyosis? X

Thank you! I haven't had an MRI, just x2 ultrasounds. I do think it's a possibility as I bleed every 2 weeks when I'm not on the pill, now I've had the coil fitted I'm hoping that stops the bleeding but so far I haven't stopped since the surgery. Do you mind me asking how you went about finding a private consultation please, did you just find your nearest and ring to book or did you need to be referred? Thank you. X

Hey Bex! I went private too. I looked on the BGSE site for the list of accredited clinics, which includes private ones, and contacted them directly myself. Echo what all the other folks here have said to keep asking for answers. You deserve them x

Thank you so much x

Hello I went on the BMI site to find a consultant gynaecologist who is BSGE, I asked to be referred to that certain consultant via my GP. Once that’s done, they send a letter to you with an appointment (got one within 2 weeks), it’s brilliant to be honest as no waiting and taken seriously xx

Thank you so much x

HiSorry you've had this experience. It's important to find out about the ovary, especially if it's stuck. They may not have known what to look for.

Can you contact the consultants secretary and question the ovary. If you find that you aren't getting answers ask PALS/complaints to intervene.

You may have to be persistent, unfortunately. Good luck

Bex23007 profile image
Bex23007 in reply to Moon_maiden

Thank you! Yes I will and I am going to ask for the photos he mentioned as they may explain more. Thank you X

Thank you, I'll definitely be following it up especially if the pain doesn't stop after I'm healed. Thank you x

Moon_maiden profile image
Moon_maiden in reply to Bex23007

Good luck 🙂 Don’t be put off if they throw a hurdle, I look on it as once you repeat your efforts they take it more seriously, especially when you contact the CQC 🤣🤣

Hey there, I had my first lap on Friday and feel so much like you. I have suspected adenomyosis diagnosed via 2x ultra sounds. Friday I had a lap, hysteroscopy, d&c and hsg (I have been based in Australia for the last 2 years, but am from the UK). They did find a tiny amount of endo, less than 1cm and I have a blocked tube but no real explanation was given of anything, I had to ask for a Dr to come and speak with me (who wasn't the Dr who did my surgery) and he knew nothing and looks like I won't find anything out any time soon. I had to request strong pain relief so get exactly where you are coming from. Be careful the codine doesn't constipate you as it could cause you more pain (movicol works very well) xx

Bex23007 profile image
Bex23007 in reply to AnnieAnnie

Thank you! It's so rubbish isn't it! You'd think they'd spend 5-10 mins making sure you knew what they'd done. Yes I've got some movicol too thank you, the doc said the same thing! I hope you get some answers soon too. Thank you x

Heya...I'm sorry you had to go through all that. That sounds strange. If your right ovary is stuck that adhesions which most likely is caused by endometriosis. So to just rule it out is strange. Definitely get an appointment with a specialist and try to get an MRI too.

Is it your first laparoscopy?

When I had mine they just gave me codeine and said to take paracetamol and ibuprofen.

But ai found that what caused me more pain after the lap was the gas. Do I was taking activated charcoal for the gas, it helped a lot.

Independently of the outcome of the diagnosis, lifestyle changes help with pains. For example cheese is one of the worst things for endometriosis.

635703 profile image
635703 in reply to happyseal

Activated charcoal….I use this if I eat gluten by mistake. You used it after lap for gas….tell me more. How was it? What happened? Thanks x

I may consider using it after my hysterectomy x

happyseal profile image
happyseal in reply to 635703

Activated Charcoal is really good for flatulence and gas in general. If during my period I'm really gassy that gives me more pain and I take 2 pills and does wonders. It's about the same for the gas they put in our belly during a lap.

I had to take more than just once a day, tho. I took 2 pills 2-3 times a day away from food or any pain killers. The first 1-2 days is still uncomfortable but then it subsided. Beside the activated charcoal I did drink peppermint tea throughout the day and had the tiny walks around the house to help the gas move.

All these helped with the gas so I actually didn't need to take too much pain killer. And barely touched the codeine. I was using mostly ibuprofen.

happyseal profile image
happyseal in reply to happyseal

Oh and it also has the benefit of absorbing the toxins etc from meds used during the surgery.

Bex23007 profile image
Bex23007 in reply to happyseal

Yeah it was my first lap! They said they couldn't see any endo and except from the ovary everything else was normal. The gas pain is awful isn't it! I've been having peppermint tea but it's still pretty bad! Yeah I was trying to cut out gluten and dairy before the Op (not overly successfully!) but will continue to do that to see if it helps. Thank you so much x

I am so so sorry this has happened- much much love 💗

Bex23007 profile image
Bex23007 in reply to 635703

Thank you x

I’m so sorry you are going through this ….ongoing pain without definite diagnosis….stay strong and keep on at them xxxx

Bex23007 profile image
Bex23007 in reply to Sadnurse

Thank you x

Hi. I had a similar experience with simple gynaecologist, he missed the endometriosis, I was discharged unable to stand up, sick. There was nothing on the notes. The endometriosis exploded everywhere. The level of pain sent me into depression, high anxiety as I could not understand my pain. I knew nothing about endometriosis, he obviously explained nothing. He ‘forgot’ to inform me and the GPS about the several polyps and cysts that he found. He performed ablation to which he is not admitting to. This is in the rich county of Hertfordshire.With my very foggy brain, I had to fight the GPs who told my face to face when I was in severe pain in front of him due to a 2 days flare up when I could no longer sit down at work, that ‘for endometriosis, NOTHING CAN BE DONE, for interstitial cystitis, NOTHING CAN BE DONE and for the perimenopause, VERY LITTLE CAN BE DONE.’ The nurses practitioner repeated his exact same words 3 weeks later, face to face. Not an ounce of embarrassment, of scruples, of compassion.

I requested an appointment, accompanied by my husband, the GP practically had a change of personality and I requested a 2nd opinion referral to another hospital of my choice. In England, we are legally entitled to ask to be referred to any hospital of our choice, but only in England. The GPs can’t refuse. Do your research. Look for a close enough BSGE Centre (Endometriosis centre with endometriosis specialistsmulti disciplinary teams ), read their reviews. Refuse any gynaecologist who claims to have’an interest in endometriosis’: they are not trained for complex cases , neither for the complexity of endometriosis. They cause us a lot of physical and psychological pains., long term.

To go private for the 1st appointment and, if you feel comfortable, to ask the consultant if they would accept you on their waiting list on the NHS (quite long atm but you also need to give a bit of time to your body to heal anyway) is also a very good combination. It will give you peace of mind, you will feel a bit better supported and good specialists usually listen to you, they don’t dismiss you. Keep a diary of your pains to evidence your case and to give to the consultant ( keep a copy for yourself). By going private for the 1st appointment gives you an opportunity to see and feel if you think you have a good specialist and, if you have not, you just don’t carry on and restart looking for another one. You have to feel comfortable and believed. You go private at your own initiative, you are free from the GPs. Just call the consultant secretary. You don’t have to inform the GPs if you don’t want to.

Good luck 🤞

Bex23007 profile image
Bex23007 in reply to Anastasia17

Thank you so much for this. I can't believe what you've had to go through, it's so disgusting to just leave people in pain with no answers or help. Yeah I'm going to go private for a consultation and looks like there are a couple of specialists near me so I'm going to do some research and do the pain diary, that's a good idea thank you so much, that's really helpful xx

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