Feel like I've been dropped after having ... - Endometriosis UK

Endometriosis UK
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Feel like I've been dropped after having a lap that confirmed/treated endo. I thought it would be monitored after diagnosis?

Red727
Red727

I had my first laparoscopy a couple of months ago after having bouts of severe pelvic pain to the point of being unable to move and ending up in A&E for pain relief. I had the lap done privately as the GPs were always dismissive of my pain and I'd had enough.

After my lap I've been officially diagnosed with moderate endometriosis, with the worst of it around my left ovary with an endometroma. All of it was excised and I had a mirena coil fitted.

The good news is, since my lap I have not had another episode of severe pain (yay). But I am still in pain on my left side almost all the time, and I experience uti-type symptoms every so often (less often than before my surgery but still get it) where I'm getting urgency to urinate with pelvic pain for a few days at a time. I'm not sure whether there was ureter endo involvement but my discharge notes did mention my ureter as part of the procedure carried out. At my follow up appointment when I asked my gynae said my left side what "stuck down" and showed me pictures of what I can only describe as an overgrowth of endo round my left ovary and a mess. I was actually previously diagnosed with pcos due to the appearance of my ovary on a transvaginal scan but after the lap my gynae said I don't have pcos I just had so much endo round my ovary it made it look like pcos on a scan!!

I also still am experiencing what I've been told are migraines and dizziness around my period which is assumed to be aggravated by my endo. So, I'm definitely not back up to 100% health.

Trouble is, now I've had surgery I feel like I've been dropped? My private gynecologist has sort of said "oh great the severe pain hasn't happened since so everything was a success cya", and my GP doesn't see any point of referring me on the NHS to anyone because "you've already been treated so there's no reason to refer you". I thought there would be an element of monitoring the condition after diagnosis (which is not covered by my private health insurance). I asked this question to my doctor and the response I got was no there is no monitoring for regrowth, I just need to come back if the pain gets bad again.

This has kind of upset me, because I'm not out of pain completely and certainly am still feeling effects of endo but thankful I haven't experienced any severe severe pain these past few months. Doctors are treating it like an acute condition that is now cured when it's chronic and I know I'm going to have to deal with it for a very long time (I'm 25 yo).

What do I do now? I'm not sure whether to insist I be referred to a gynecologist on the NHS to carry on my endo care or whether I'm wasting NHS resources and time (like I feel I am atm) because I'm pushing for care I apparently no longer need?

1 Reply
oldestnewest

Wow!

Your story is like a mirror of me!

Apart from I didn’t have a same physical diagnosis... they found with me - endo moderate... pouch Douglas, uterosacral ligament, in both ovarian fossa, scattered and dotted around and pelvic side wall and extensive adhesions on all 3 of my endo laps and diagnosis.

I had my first diagnostic lap private but due to a complication it was put back a year and I had to then a year later go on the nhs to be near intensive care in case. They found endo and they treated and my after care became diabolical I didn’t see my consultant after the surgery at all just his registrar who told me to google the answers as she was unsure on my simple endo questions! , I sought private care with the same consultant for follow ups and the same useless, I battled with my gp who was and is still useless in helping me. So iv battled finding a Gynae that doesn’t do this!! And years of ups and downs. I have now found one ‘the one’ thankfully!! Who’s just done my 3rd lap.

Search for a new private Gynae. Sometimes if your insurance doesn’t cover it... pay for the consultation they are only around £150/250 a time and it’s worth it to get the help. Then if they require treatment or surgery they should write to your gp and worst case scenario you will have to wait and be seen NHS but you get your foot in the door! Research and research no matter what

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