Should I change clinic?

[Red262]

Hi everyone,

I hope you are all keeping well and managing your pain ok. I'm on here again because I'm not, unfortunately. I'm with an endometriosis clinic in the NHS and have been for the past 2 and a bit years. At the beginning, I was rushed to surgery and they confirmed and removed endometriosis. Since then, not much has changed. My pain levels were better for the 6months following surgery, but it has only gotten worse since then. I keep going back to the clinic, and they've run some tests, but apparently all are 'normal', so they don't want to do anything else. I've also been offered no help in effectively managing my symptoms, except to take strong pain killers (at the moment that's tramadol), and do yoga...

I'm feeling completely at a loss as to what to do - is it worth the fuss of trying to change clinic in the NHS to get a second opinion?

More details on the tests, in case it's of use: I've had an ultrasound that showed some fluid pockets and shadows. The woman running the US was really nice and talked me through everything she saw, and said that it was very clear to her that I had active endometriosis. However, when the clinic got the report they said it looked likely that I might have some endo, but wanted an MRI to confirm. Fast forward 9 months and I finally get an MRI. No interpretation until my next appointment at the clinic 6 months later. Here they told me the MRI scan was all normal and did not show any endo, so they have no reason to want to operate or treat my endo. However they still think it is most likely the cause of my pain... When I got the written report of this conversation a couple of months down the line, I was shocked to see that they said we had discussed the MRI results and the fact that there were several visible adhesions. At no point was this discussed with me. I got back in touch with them, only to be told it doesn't matter if the MRI shows adhesions or not, it doesn't make any difference since they won't operate for adhesions. That in itself is fine (I don't know enough to argue against it), but I felt cheated by the fact that we had never had this discussion and that I felt like my pain had been played down.

I feel like I'm back at square one where noone is believing my pain or doing anything about it! In fact, having a diagnosis of endo is almost making it more difficult to get any help as any pain is put down to my endo, without any help on how to manage it!

Any help would be really appreciated. Thank you in advance x

[EndoSuckss]

If you aren't happy with your care, I would 100% recommend changing consultant and getting a second opinion.

Good luck x

[Nikkky in reply to EndoSuckss]

Hi, I would encourage you to change to another clinic. I was treated the same as you have been, even though endo was diagnosed. Having a diagnosis doesn’t necessarily solve it. After I had my first laparoscopy 14 years ago, and endo was found & treated, I wasn’t really listened to or believed when my pain returned. I was made to feel like I was a problem and just got referred to another consultant who was really horrible to me. That put me off seeking help for another few years and I just suffered for even longer. Please change to another consultant as you deserve better.

[Red262 in reply to Nikkky]

This is exactly my experience!! I'm sorry you had to go through it for so long! I'm not even sure how to switch over but I think I'm going to have to now. I've been ignored and had my pain belittled for 2 years now.

[Nikkky in reply to Red262]

I’m not sure either but there’ll be women on here who can advise you about finding someone else. Personally, I would seek your own referral rather than involve your current consultant in it. I was referred for a second opinion on the suggestion of my gynae consultant at the time. I naively thought he was trying to help me but the consultant he referred me to was just awful. I realised after that that they were just trying to get rid of me! I’m always suspicious now and I don’t go back to see any doctor unless I feel confident in their ability and attitude. I hope you get sorted soon, good luck!