Hi ladies! I went to the specialist for endo. He completely denied all my symptoms and in other words didn't care about the fact endo was making me so bad (most of the time staying in bed...) that I've missed all my essays since March this year as well as half of my exams. Despite this, he sent me to do an MRI for the thorax (endo is affecting my lungs). He just told me to change of pill, that's it.He was like oh it's psychological, if I do the surgery, I'll find nothing... And my symptoms, then? And the the pills that I'm taking everyday that you prescribed me to stop my periods? I think he's getting too old and no longer wants to have patients for endo. I will find another specialist but I tell you, I've got enough, so much enough that I'm thinking about euthanasia abroad if nothing works because I'm too unwell to continue my studies/work. Can they refuse to do a laparoscopy if your MRI shows nothing? Is that legal?
Refused for laparoscopy Disappointed and sad - Endometriosis UK
Refused for laparoscopy Disappointed and sad
Hi
Sorry you’ve had a rough time. That was a horrendous consultation, you’ve seen right through him though 😂 can’t suggest treatment if nothing to treat 🙄
Definitely get a second opinion. It’s not recommended to go completely by scans, as they aren’t good enough to use as a diagnosis. I know the aim is to reduce operating if they can, some think it’s not necessary. What’s important if you do want an op is making sure they remove at the same time not just do an exploratory op, it’s a waste of time doing a look see without treating.
Stick with it, it’s not your imagination.
Thank you💞 I'll see different specialists until I get someone who's serious enough to do the surgery!
Let us know how you get on 🙂 An op is still the only way to truly confirm Endo or not. Even if not, there still has to be a reason for your pain.
I know it's endo, have been fainting each time and shouting each two seconds in agony for two hours during periods since I was 18. Then it got worse each year, waking me up at night to be in pain and fainting again during periods. And now to the point at 24 that my lungs are also touched by endo and I'm in pain everyday whether it's periods or no and I cannot do any gym (swimming...) without being in terrible pain if I I don't go very slowly like a person swimming in her 80s. I want the operation because I cannot continue my life, I can no longer travel by plane, I cannot do any sport, I cannot study... I know there are risks associated with the surgery but at least, I will regain a bit of my life and be able to do certain things that I judge necessary for work and uni.
I need to wait 7-9 months to be able to see another specialist for endo. I'm really depressed.
I know how you feel, it’s a complete disruption to life and what you can or can’t do.
GP can speed an appointment up by making it urgent. They may say they can’t but they can. I’ve had my GP do it in the past. Can you afford to pay for a consultation? As long as they do NHS they can add you to their list for op.
Have you considered making a complaint as well?
Risks are quite slim for surgery, I’ve had five since 2020, mainly screw ups and not doing the job properly in the first place. The desperation to get rid of pain is enormous
I'll ask a GP to make it urgent. I was planning to go to a different GP and pay for the consultation. I don't think complaints work, doctors are all like gods and my dad passed away because of professional mistakes at hospitals but nothing happened.Were you able to survive after 5 operations? You mean that some just made the keyholes during laparoscopy but saw nothing?
Let us know how you get on with GP and consultant 🙂 write everything out to take with you.
I’ve still got a complaint with the GMC going on, you’re right complaints are very hard work.
First was to confirm Endo, he did take some out but uterus was swollen and more Endo than he thought, then hysterectomy and Endo, followed by bowel adhesions and double checking for Endo, they missed gallstones, that was next one and most recently was to get rid of any adhesions and he took out appendix.
I don’t know the answer to this, but I’ve never heard of being refused before.
I just wanted to say that I’m so sorry to read what you are going through.
Good for you continuing to advocate for yourself, finding another specialist and being heard. It’s truly disgusting the way gyno issues are so often ignored, and we are not validated.
Best of luck to you xx
Thank you. 💖
Hi, so sorry, I know what's to be in pain all the time,I'm currently like that for over year and a half. I've been refused laproscopic as ,ultrasound and CT scan didn't showed anything, but I had endometrioma which burst and they still said is fine to leave it.Then as I've been bloated with sevepain 24/7 asked them if they can do a biopsy of the endometrioma, as had fibroid last year which was removed and they've agreed. After opening they found stage 4 Endo,that dnot show on any tests.Everywhere on my ovaries, bladder, bowel, and now as this effects my digestive system even after the removal of the Endo I'm in constant psin and bloated to a point is hard to breath 😑 Just go to a private one if you can. Or please sign for AXA medical insurance and fo it vua them.They will cover the laproscopy. Good luck. I'm still looking for cure.xxx
Thank you for replying to me, it means a lot! 💖 My digestive system is also a total mess (always bloated despite following a super strict diet) to the point that after going to the toilet, sometimes I'm in crazy pain and must sleep for the whole day (heavy eyelids, super tired, can't do anything). I do believe it's stage 4 as well because endo is now affecting my lungs (taking noni juice helps me to manage a bit the symptoms). Really? With the AXA medical insurance, they can reimburse the laparoscopy (it must be private)? You know when your lungs are being attacked, you can't breathe, you're coughing all the time and they want to do nothing, I'm like do I need to die for them to do something? If it were just the intestines and the pelvic area touched, I'd be like it's OK, I'll manage it like I've always been doing but since it's my lungs now, it's a whole different story and I'm super scared to experience what I've experienced the previous months with the lungs and still now (feeling like you've got not enough oxygen to speak, stabbed in the ribs, pain in the chest...). Thank you! 💖
When was your last surgery? Did they remove everything? You had nothing near the lungs? Did you have to wear a pouch for the intestines?
Yes they remove the endo with excision and some of the places on my bowel and blader outside with laser. Don't know if have anywhere else as the lungs only because was Gynaecologist surgeon I don't think He can check there,so I'm not looking into it now,but maybe will get a second opinion on both gyno and gastro as my gastro doctor thinks I have IBS,when lady year after the fibroid removal had Sibo for which I've fone strict LowFodMap for 8 weeks with no help,so they gave me the 2 weeks antibiotics with further 2 months of diets, 3 weeks after the antibiotics my symptoms came back they haven't even retest me yo see if the Sibo is gone?They're just assuming is IBS, but Sibo most of the time need 2 ,3 round of antibiotics. To be honest I'm going abroad for my digestive system, as here is so difficult to find a specialist. They have just dismissed me,after I asked to have a repeat tedlst for Sibo before starting again the same diet that did not help me ...
Last surgery this April 2023.
It usually takes 6 months to get better after the surgery. How old are you now (so that I know if I've got a chance for a surgery as they think 24 is too young)?
I'm 43,so maybe different story than yours but still they can't dismiss you.
I really do hope because if everything turns out to be bad, impacting my career, my projects and my life is destroyed because of that disease and only have terrible bad luck. And if all my last attempts to find a remedy with new specialists go bad, I truly no longer want to live. I need to do an MRI in summer for the thorax, I'll try to provoke another pneumothorax just for that MRI in stopping all treatments to provoke my periods and anyway I have to stop the pill during that month (usually, periods trigger terrible issues with my lungs). I know I'll feel very bad for another two months and this time I truly hope they'll find something. I prayed God to make things worse when I'll get my periods and hope to get a good collapsed lung this time (I'm sure He's not used to receiving such requests). But really I'm super depressed because each four months that I get the periods, I feel terribly bad for 2-3 months , leaving me just one month where I feel more or less OK before this situation repeating itself. That's not something that I can endure physically nor mentally. Being only 3 months more or less OK spread in a year and the 9 months left being in a terrible situation because of endo, is something that is not human and I can't continue 'living' like that. I don't want to leave what's 'left of my family' in difficult conditions because I'm taking care of x as my dad is gone (generalised cancer). Otherwise, it would have been such a huge pleasure not to be here anymore but responsabilites refrain me to do so.
Please hold yourself. And still requested another independent opinion. My doctor was Natish Narvekar from HCA Shard hospital in London. If you have any other questions let me know.
Thank you💕
I can’t say much more than what has already been said but I’m so sorry you’re going through this.
I was recently diagnosed by lap with stage 4 endo, attached to my bowel, at age 30. I’ve been trying to get doctors to take me seriously since I was about 18. I was also refused a lap for a long time and had a clear ultrasound and MRI scan.
I would definitely agree with getting a second opinion. Unfortunately some doctors are much more understanding than others so you may have more luck with another. You obviously have read up online but I would make it clear to them that it is medically established that the only way to truly diagnose or rule out endometriosis is a laparoscopy. They are refusing the one method that can definitively diagnose and treat your symptoms.
Definitely don’t give up. I think back to several times over the past few years when I should have advocated for myself better with doctors, so definitely be strong and persevere.
Wishing you luck and happiness x
Thank you very much!!!!💕💕💞♥️💓♥️♥️How did you finally get your laparoscopy done?
I’ll be entirely honest, I ended up having a private consultation at a Nuffield health centre. It was £200 but I saw someone who listened to me properly and almost instantly said she thought I had endo and recommended a lap. She wrote all of that up in a letter which I took to my NHS consultant and insisted on a lap based on what the private consultant had said. Obviously not an option for everyone as I know it’s expensive but I found that through the NHS I always felt rushed. Xx
Perfect, I should definitely try that if nothing happens! Were you able to choose the specialist to get the laparoscopy done by a surgeon specialised in endo?
I’m not sure where you’re based but you can search for gynos in your area on here: nuffieldhealth.com/consulta... obviously going private isn’t at all ideal and I would have preferred not to but I was at the end of my tether! The consultant who did my lap was one through the NHS - I didn’t get to pick who but she was an expert in gynaecology, not specifically endo. I’ve since been referred to an endo specialist because my endo is pretty advanced x
Was your lap successful despite her not being an endo specialist? Thank you for the link! 💖
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