Seeking second opinion from specialist centre due to confusing diagnosis

[Jojams]

Hi, I have managed to get my GP to refer me to a specialist endometriosis centre. Unfortunately no clinic appointments are currently available on the online self booking system so am waiting for a call back from the clinic.

I had also asked my consultant gynaecologist to refer me to the specialist centre - his first response was "i wouldn't do that if i were you"! He said he thought it unlikely i would get any benefit from being referred and that the clinic where i see him is "due to become accredited".

After i had discussed my ongoing pain and bowel symptoms (despite a Mirena having eventually stopped my periods apart from occasional very slight bleeding) and asked him directly for a referral he did an ultrasound scan and told me he didn't think that my endometriosis was as bad as he first thought.

In 2019 had quite a large ovarian endometriotic "chocolate" cyst removed (by him) and after that surgery he said he suspected that i have endo on my bowel and that it appeared as though my rectum was "tethered into" the endometriosis tissue. However he said at the most recent scan that things apparently looked ok and pretty " healthy"and nothing seemed stuck. I also had a colonoscopy about a year ago which apparently showed nothing inside my bowel.

While this sounds positive I am still suffering from symptoms and to be honest I am pretty confused after being given a very different picture from the laparoscopy in 2019 to what he told me showed on the recent scan.... Can things have changed on their own ? When i asked for further explanation he said that during the surgery because it was "messy and bloody" removing the cyst that it was difficult to see.

At the time of the Lap he also said he couldn't see my appendix (he actually asked whether i had had it removed, which i haven't) and when i asked what my bladder looked like he didn't seem to have noticed or have been able to see it properly so couldn't give me an answer. So it didn't really feel like a thorough assessment of my endometriosis.

My existing consultant has now sent me an appointment for a Pelvic MRI (at the standard gynae clinic). As I am still waiting for a call back from the specialist endo centre to be able to book an initial appointment with them should I wait for this in order to get a better opinion /assessment?

Presumably you cannot accept both appointments to get two opinions?? I am on nhs.

Any advice would be much appreciated. Thank you x

[kelsbels88]

Hi my advice Keep pushing and take anything you can. Although your gynae may be very good a specialist does endo day in day out and is trained in the unpredictability of the disease. They will know all the intricate little places it may hide and will explore all possibilities. I felt my specialist consultant was the first dr to take all of my anxiety and symptoms and pain into account. My gynae before that was great he was happy to put through my referral.

I really hope you get sorted and as I’ve said a lot recently don’t let a dr tell you how you feel mostly being male don’t have a clue what it’s like to live with our condition

Keep pushing

💗 Kelly xx

[Jojams in reply to kelsbels88]

Thank you for your message and kind support Kelly. I was starting to doubt myself and thinking perhaps it's something else (ibs?) but then I remember that I had a large endometrioma cyst which is clearly an endometriosis diagnosis and my other pain and symptoms could be endo related. Thank you ❤️😊

[kelsbels88 in reply to Jojams]

Your welcome - I found the symptom list on the endometriosis uk website really helpful when I was researching and diagnosing myself 🙄.

Don’t doubt yourself your not crazy if you think there is something more or wrong keep pushing for answers and don’t take no or be brushed aside. What your living with day in day out is more than what a dr might learn on their training (unless they specialise 😉)

Keep pushing and feel free to msg if you need an ear xx

[Jojams in reply to kelsbels88]

Thank you 🙏😊 what's your situation? Hope you are well. Xx

[kelsbels88 in reply to Jojams]

Haha how long do you have it’s long 😉😉 everytime I try to condense it it doesn’t work so go grab a cuppa 😂

We got married in 2016 and that’s when we divided to start trying. Straight after our wedding. We face it a few months as I was in the pill for 12 yrs, within 7 I was in agony every month. Back and forth to the drs they said it’s coming off the pill wouldn’t investigate because I was under 35 so had to keep going before any investigations took place. Within two I was back somethings not right. I dropped 2 dress sizes none of my trousers fit. Eventually got referred to a consultant gastroenterologist as they thought it was my stomach because of the weight loss and maybe IBS. Did a gastroscopy all fine. Did the usual bloods all clear. By the time I had the gastroscopy a good 12months of so later I had worked out when I was getting my pain and symptoms and told my gastroenterologist he thought maybe pcos put in for me to be referred to gynae. Eventually did a diagnostic lap where they found endo and two blocked tubes so for all my heartache each month I never would have conceived.

He said my left side (where my pain was worst) was stuck together my ovary to bowel and back wall and I believe it is twisted too. The right side tube he said he cleared. I thought great 25%ish chance could conceive so we kept trying. I was completely relieved by this point I was ready for confirmation I knew what I had I just needed them to prove it. (I diagnosed myself told them that was what I thought - blah blah blah)

The pain continued to get worst in all this my hubby got promoted and we had to move counties. Got referred to a new gynae he gave me two choices knowing my medical history removal surgery by a specialist because they won’t touch the left side or ivf it took me two weeks to decide what to do. Back and forth I am so desperate to be a mum but I knew deep down I couldn’t risk it. So off to the specialist I went.

Firstly Great guy! Not once taking to him have I ever felt dismissed about a symptom or twinge or feeling. But anyway I digress. They have since done more bloods tests, a ct colonoscopy an mri, two ultrasounds and I am finally on the home straight to excision surgery on the 28th.

It has been 3 diagnosed yrs of drama and pain that you have to constantly tell people about because with this disease you don’t look sick but you are. Just because they can’t see it doesn’t mean you aren’t. I hate it winning and beating me so have this awful push through the pain mentality which I appreciate is not easy for everyone. I guarantee you there have been times I should have phoned in sick and still went to work only to then wish I had phoned in sick because for all their words they didn’t actually care.

Throughout all of this I still had to deal with my closest friend at the time getting pregnant lying to me about it, telling me that I guilted her into telling me she then rubbed my face it it all the time complaining about her symptoms and being just crap at her job where I picked up the pieces but she took the credit. She also got a false positive and had the cheek to say I can imagine how you feel botch please you have no idea!

This disease is shit! In all manners it makes you feel like you constantly have to doubt yourself. Like you aren’t worthy, and will push you to the point where you want something to take the pain away. It will make you miss gathering and potentially reduce your friendship circles, it is hard. Sadly I have no close friends outside of family anymore because of ppl being shit and this disease.

I honestly hope you get your second opinion as we should be believed. If this was a male condition they’d probably have a cure by now.

Sorry it was long if you made it this far thank you so much for reading and staying lol 😂

Kelly xxx

[Moon_maiden]

Definitely see the specialist, if you look at the NICE guidelines your consultant should have referred you there as he’s not classed as a specialist centre.

At lap it was discovered it’s in the bowel and the gynaecologist referred to the endo team.

Good luck, hope you don’t have to wait long.

[Noodle1984]

Please please please seek a second opinion. The info he is saying is very contradictory. I had stage 4 recto vaginal Endo (my rectum fused itself to my vagina on the inside). My surgery took over 2.5 hours with an Endo specialist and colon specialist. When I had a colonoscopy the year before there was nothing seen on the scan. You can have bad Endo without infiltration. I’m sorry you’re getting such confusing info.

[Whoisthis]

Go and see the specialist, the one you are talking To sounds like a classic “have a go” they love to think they know everything but they simply don’t, and he’s proved that simply by suggesting he can see changes on a scan??

It a well known medical fact you can’t always see endometriosis on scans, let alone define that it’s got worse!!

So 100% specialist and get as far away from that plonker as possible.

And fight hard for excision surgery don’t let them use ablation (laser) at any cost.