Hi all,
Some of you might have seen me post on here before about my journey. I had a laparoscopy with a general gynae back in October who left a two sentence report on my file saying she had removed endometriosis spots. She told me that that removal (via heat) was the treatment along with the coil they’d fitted. Everything she said made it seem very mild and she said I didn’t need a follow up treatment.
Unfortunately 4 weeks later I was in severe pain again and my GP sent me for an ultrasound which revealed a cyst. So she referred me back to the hospital for said cyst. I was also bleeding regularly with the coil and often from my back passage.
Today I had an appointment at the same hospital but another gynae. This gynae opened the conversation with I’m not worried about your cyst but we need to talk about your endometriosis.
She basically went on to say:
- I hadn’t had the right treatment and actually the surgery had just barely touched the surface.
- she showed me photos which showed the Left side was all stuck together and i also had adhesions on the rectal wall (interesting as I had flagged potential bowel endo before surgery but was told nothing about this post surgery)
- she pointed out that whilst that hospital are not specialists, this was actually one of the worst cases she’d seen. She said I will need another laparoscopy, this time lifting up something and doing a full excision/reconstruction.
- she also said I will need a referral to the bowel surgeon to look at the bleeding.
- she finally suggested referring me to the specialist endo clinic in a nearby area (something I was going to ask about anyway). She said usually a GP does this but she felt it was urgent enough for her to write too.
- she also expressed concerns about fertility and said if I was planning children not to put it off.
- she removed my coil (at my request due to side effects, as well as the bleeding and weight gain) but said I need to go straight on the pill to stop it getting worse.
I’m so grateful that this doctor was so kind and proactive. After my post surgery experience I was very concerned it would be an instant dismissal again.
I’m planning to put in a formal complaint about the original surgeon because you could clearly see the damage on the images from the surgery, but yet I was told it was minor , I had had the treatment and didn’t need a follow up. If the scan hadn’t of found a cyst I wouldn’t have even had an appointment today.
Just wondering if anyone else has ever experienced similar? My head is spinning at the moment with a mixture of relief, anger and anxiety about more surgery and time off work.
Thank you if you read this far!!