I had my follow up appointment today after my laparoscopy last month where no endo was found but severe adhesions. The appointment today was to discuss the findings and further surgery. It wasn't even the guy I was supposed to see. My request for an MRI was flat out refused. And my adhesions once again put down to my c-section in 2009 and PID. I just don't even know what to do next, I'm so frustrated that they won't do an MRI to look for adenomyosis or anything else.
So sorry you’re going through this, was the laparoscopy with general gynae or an endo specialist?
I only ask as I had a similar situation back in 2021 where general gynae did a lap, said they found no endo but found adhesions and ablated them and then discharged me, I pushed and pushed at gp after that who referred me for an MRI, which did show deep infiltrating stage 3 endo and adenomyosis, so I then had a lap with an endo specialist last year who excised it. The general gynae from the first lap had no idea what to do or what he was looking for basically, then I had to keep pushing at my gp for further investigation!
I hope you get some answers soon x
I'm going to assume general. The guy I was supposed to see today is a specialist I believe, as he's currently the Head of the BSGE and runs an Endo clinic. But, he sent a member of his team to do his appointments today. This Gynae's reason for not agreeing to an MRI was because a Laparoscopy is "superior". I felt too embarrassed and self conscious to argue even though as far as I've read, Adenomyosis can't be seen during a Lap. I've emailed the secretary asking for the reasons for the MRI refusal in writing. The gynae today also mentioned Chlamydia as a cause for pelvic adhesions (PID) and I said "as far as I'm aware I've never had an STI" and he just brushed that off saying it's mostly symptomless so I wouldn't know. Now, I'm all for ending stigma surrounded STIs however for personal reasons, I think I can pretty much guarantee that I've never had Chlamydia.
Do you know if the surgeon took any biopsies?
I don't believe so, no.
Emailing was definitely a good idea. I’ve got to a point now that if they refuse any investigations or treatment I’ve requested, I ask them to write their refusal and reasoning in my notes and ask for a copy for myself. 9/10 times they don’t want to do that, to cover their own backs! It definitely sounds like you’re being fobbed off, I know how it feels and it’s awful but at the end of the day, you know your body best so keep pushing, hope you get some answers soon x
I've had 3 missed calls since emailing, haha.
I feel you need your doctor to refer you to a different Endo Clinic?My sister had pretty bad pain after her C -Section for about 6 yrs!
Endo sometimes can't be seen. This guy should have taken biopsies! What a waste of your suffering and NHS money!
Your doctor could prescribe a Steriod called Danol for 3mths to see if you feel better? I don't think other drugs like Zoladex the doctor can prescribe without the Hostipal telling them too.
The pain you suffer when does it happen? Anti inflammatory painkillers, Belladonna, anti Histamines and anti spasm Tea Fennel at night if you wake in pain.
As I say to everyone on this Site. Try a TENS Machine . Read my answers on other's answers.
Best wishes
The pain is sporadic, but always worse on my period and sometimes during ovulation. I understand that the adhesions may explain the pain I experience, but the incredibly heavy bleeding keeps being ignored. It's not on any of my laparoscopy notes or discharge notes. I can't leave the house during the worst of my periods. Clots the size of my fist, just blood gushing profusely. Which is why I wanted an MRI scan to look for Adenomyosis or something else that may have been missed. I didn't even know that they should have taken biopsies during my laparoscopy. I feel so defeated and frustrated today. I don't know if it's even worth complaining to anyone or looking into getting a second opinion.
Well it is worth complaining. Yes I remember the painful heavy clots. Mine werid colours and some fibrosis. They also gave flooding. Change doctor! Get a 2nd Opinion at a different Endo Clinic! If you live in London Queen Charlotte's or the Roehampton. Periods I was told aren't meant to be that heavy. For me it was 9days like that with internal and external pad, flooding. On the worst days I spent more time in the toilet, changing pads or clearing up my mess! The embarrassment to me in my 20's to 35's. The exhaustion, lack of sleep it was extreme to find coping methods.
Many operations to take put adhesions, scars and various types of cysts.
You need help and you deserve it!
My best x
I feel you. I went through the same struggles requesting an MRI. My GP actually agreed in the end but then she realised that Primary Care can't authorise that type of scan. Private Gynae kept refusing and then (in the same consultation where they told be so many incorrect things about endo) said that I can have anything if I pay for it. By this point I knew I couldn't trust them so I went elsewhere. Fast forward a couple of weeks and I was seen at a private Endo Centre, symptoms validated and MRI scheduled. The scan showed adeno but no DIE - he suspects that I do have endo but just not to the extent to it showed on the MRI. Surgery booked but next month.
Don't give up. Keep fighting. We are all with you!
It's mindblowing to me that they won't send me for an MRI. After complaining yesterday I've since been offered a hysteroscopy. I don't know if that's the best way to diagnose Adeno or not?
I’ve had a similar experience to you.
An MRI is on the NICE medical guidelines - I would quote these when emailing and in your appointment have a copy - they are all online.
Adeno won’t show on laparoscopy as it is in the muscle wall. Look on dr seckin website or a book called adenoymiosis the evil cousin of endo.
Keep emailing the department so you have the written evidence and if they don’t reply email again etc.
Contact PALS at the hospital or you could mention in an email if they don’t answer your question or put you for an MRI you will contact PALS or make a complaint - usually they will probably do something as they don’t want an issue.
Another option is look online at the consultants in the department and request to see someone different.
Take someone with you to the appointment who can also advocate for you and have a list of the prepared questions.
When I had my appointment in November I just stated I was having x y z symptoms etc and I want an MRI - luckily it was a different consultant who I had never seen who agreed but i hadn’t been offered one before - now been refused an ultrasound.
If they are discharging you I would also question it and you could ask to remain on an open six month case and contact them for a future appointment - if you are discharged then it could be an 18 month wait for a re-refferal.
You could also go back to GP and ask them to refer you to another hospital for a second opinion and research some in your area.
If they miss anything off the letters then I would also email about that - I’m also in the same position as that. And when you have the next appointment just be specific and say you want x y and z noted in the letter.
Next appointment I would also them point blank what are you going to do about this bleeding? What if it is adenoymiosis, have you considered this?
I was told face to face by a Gyne consultant that my symptoms two years ago were nothing Gyne related and he wrote that in my letter and now I have bebe diagnosed with adenoymiosis and they totally missed it and never mentioned it in five years.
Also if you have bad bleeding and pelvic pain from it the hystoscopy could be very painful - they will tell you it’s just in the clinic and take over the counter painkillers but you actually have a right to have local sedation or be totally under anesthetisic- they just didn’t tell me this and I only found out after.
Some people I know have been ok with it but it was horrendous for me. I was in so much pain and I remember the nurses holding my head because I was screaming - needless to say they couldn’t complete it because I was in too much pain and it was ridiculous I had it and should never have been given it like that given my history of chronic pelvic pain.
If you look online there is a campaign about it and women not being offered it under pain relief etc.
First appointment with a consultant
MRI before laporoskopy? 
Private consultation? 
Feeling deflated after first appointment with Gynaecology! Yet another ultrasound! 😢
Cancelled appointment 
