Being spoken to like you are not there.

[Loulou857]

Hi, it’s my first time on here. I’ve been prompted to join to get some insight into others experiences of endometriosis after attending a consultation yesterday with an “Endometriosis specialist”. Long story short, two doctors stood discussing me and what treatment I need whilst I’m sat there, unable to follow what on earth the actual plans were because they were just talking amongst themselves. When they did speak to me, they didn’t listen properly and would cut me off mid-sentence. I ended up bursting into tears, they then rushed through what their plans for me were and left the room. A minute later a nurse entered and said she had my injection. I was like “woah, what injection?? What are you talking about??”. Anyway, the nurse was fabulous, she sat and listened to me and then went to get the doctors to come back to talk to me, who then explained properly what the plan was; prostap injections for a few months, MRI scan to see where the Endometriosis is properly - they suspect it’s embedded into my bowel, put me on the waiting list for surgery on my bowel. So, what I was wondering, has anyone else had an experience like this???

[GrittyReads]

Hopefully someone will come on who can tell you more about the details of the exact situation with your Endo that you describe.

However, my understanding is ... that while MRI scans can be helpful, you really need a laparoscopy to absolutely confirm that you have endo - and exactly what type of endo it is (there are several different sorts), where it is, and that they really have found all the endo, in all the difficult to access places. Endo is often missed if it is tucked away.

Were the consultants Endo Specialists, or just general gynaecologists? In the UK, the usual procedure is (or should be) a purely diagnostic lap, first; but then severe endo - particularly if it's on the bowel - would be referred to BSGE Centres (specialist Endo centres). There they have the skills to find and recognise all sorts of endo, as well as being more skilled in removal - and they have bowel and other experts on hand if the endo is in particularly tricky places.

I would read around on here, check out the 'Endo Uk' site and talk to their advisors, and also have a look at the Endo Group on Facebook. I would also ask your GP what he has heard back from these consultants, to see if they are, or are not, suggesting you be sent to a BSGE centre. Your GP should know about the strict protocol that is supposed to be followed for referring certain Endo sufferers to the BSGE Centres, and may be able to tell - from the consultants' report - whether you should be seen by a BSGE Centre, or not.

Hope this helps.

[Loulou857 in reply to GrittyReads]

Thanks for your reply. I’m quite far into my endo journey, I was diagnosed in 2002 via laparoscopy and have had further laparoscopies to remove endo from behind my uterus, various other places, and detach adhesions. My last surgery in 2014 found some patches on my bowel but the surgeon said it wasn’t worth doing anything at that time. I’ve only ever seen regular gynaecologists in the past but have now finally been referred to an endo specialist (who I had the described experience with). My GP initially referred me this time because of an endometrioma on my right ovary, I’ve had many of these over the years but I’m getting awful pain and bloating with this one! So bad I ended up needing a hospital admission last week to get control of the pain. Anyway, now I’ve had time to reflect, I think I got so upset because my expectation of the consultation was that we were going to discuss the endometrioma. In reality, they didn’t ask about that, after I’d mentioned my bowel symptoms it was like a whirlwind of putting a plan together of what they were going to do but the way they did that was like I wasn’t there! 😂 I’m so thankful for the nurse because she made the consultant talk to me again and explain his plans properly. So although the consultation started off negatively it ended positively thanks to the wonderful nurse 🤗.

[Alessia]

I am sorry that you had such a bad experience. It is really hard to deal with such things. This is due to the fact that you usually go to hospitals because you are feeling sick, Not so well or anything else similar. Being on that state and having to deal with what you dealt, it is hard. I have had a very similar experience dear. Recently I had my uterus removed... Long story short, cancer hit me and there was no other way to go away from this! Now back to the relevant part. There was this specialist who was the worst human being ever. He would just walk in my room sometimes and ask me the most perverted questions there are. I used to think that the questions were medically relevant, but I don't know for sure. He used to treat me as if I was a prostitute. What the fuck was he thinking I have no idea. It wasn't pleasant at all to deal with him but I had no other option. My husband wanted me to go to a better clinic but our economical state said that it would be better to stay at this one. I hope the same doesn't apply to you! maybe all you need to do is switch clinics.c