New here and would love some advice/to chat!

[MD22]

Hi everyone,

I'm new here. I have just moved to the UK from Australia.

I've been suffering endometriosis for about five to six years now and am just really unsure on what my next moves should be. I'm severely allergic to the pill and can't seem to handle any unnatural medication to deal with my problem. I had a laparoscopy two years ago and they found endometriosis in my bowel and even in my back they said. The operation was done by non-specialists. I had a lot of pain after the operation but for a while it got better but now, it is worse than it has ever been. I have developed severe nausea along with the stabbing pains in my stomach and aches in my back. Sometimes, migraines as well, another new development.

I had an MRI before I left for the UK and was told they couldn't find anything, and therefore, didn't have endometriosis any more but then read that an MRI will not always show up if you have endo? Basically, I just feel super confused at the moment.

Now, my pain has continued to increase and the doctors basically shrugged and said that medically speaking, there is nothing wrong with me. I have been thinking of going back to have another laparoscopy and was wondering if I should be looking at getting a endometriosis specialist to do the operation or simply, just to talk to about it all?

I haven't got any children and really want some so don't want to look at anything like a hysterectomy yet. But, I'm just really depressed with it and anxious not to mention, the pain is starting to get to me! I'm on endone for the pain which is something I don't want to be having either.

This is my first time I've ever talked about this outside of my family and would love to talk to other women who face this because it can be so isolating!

[Starry]

Here in the UK there are specialised BSGE accredited endo centres which deal deal with severe endo cases eg if there is bowel involvement. With your history your gp can probably refer you directly.

Its possible that surgical adhesions or central pain rather than endo is causing pain but yes mri doesn't always show up endo. After 2 years its worth getting an expert review I'd have thought, as even if you were clear then it could have developed in the meantime.

bsge.org.uk/centre/

Hope that this helps x

[Fabbird]

Hi, when they did your MRI did they use a contrast like gadolinium? They inject this into your arm about halfway through scanning. I believe it helps the endo show up. Just wondering if that might be a reason they didn’t see anything? You are right that MRI isn’t always able to pick it up.

[JellyKat]

Hi! Are you allergic to the active ingredient or one of the others in the medication?

I’m allergic to two different ‘inert’ fillers (povidone and macrogol) which have different effects on me, which limits the brands and sometimes the types of meds I can have.

And no, it can’t always be seen by scans or even by laparoscopy - just because they can’t see it doesn’t mean it’s not causing you pain! Please don’t give up! x

[RosalieMax]

Hi, I've recently been diagnosed with severe stage 4 endometriosis, also on my bowels (by laparoscopy) . I've been having very severe pains for as long as I can remember and have been saying I thought I have endometriosis for many years... Only now had confirmation! Like you I really want children... After a long long time I've now met a very good consultant gynaecologist who has taken over my care (on the NHS) , has performed the laparoscopy, and will talk to us about IVF. I think you need a good fertility specialist Consultant Gynaecologist to discuss all your options. MRI does not always show endo. In the meantime, exercising helps me to feel better in general, and when the pain is bad ibuprofen, paracetamol and hot hot water bottles. I've found it nice to hear other people's stories on this forum cause it makes me feel not so alone with this shit condition! X x