Complex hyperplasia, what’s next?

[Lizsanchez123]

I have endometriosis, 8 months ago I was heavily bleeding and was referred to a gynaecologist.

They did a hysteroscopy and diagnosed me with complex hyperplasia without atypia. They said the best treatment for this would be the marina coil, so they put it in.

They said I had a lot of scarring and my womb and bladder were stuck together, however it was so bad the doctor couldn’t separate it. They referred me to Professor Ahmed Who specialices in this, 6 months later he did another hysteroscopy, he told me he was confident the coil would have worked, however when I came round from theatre he told me my womb lining was still very thick and everything was stuck together so bad, they had to do this by feel rather than see? I also had a big blood clot removed. They took the coil out and put a new one in.

I am now awaiting another lot of biopsy results, however, what is likely to happen? He did the second hysteroscopy in the hope my womb lining would be thinner and I would be able to avoid a hysterectomy.

Now that has not been the case, I am worried about having a hysterectomy because my bladder and womb are attached. I am under a professor for urology as I have kidney disease , my gynaecologist professor said if they do the hysterectomy it will have to be done with both teams present.

Sorry for the long post, but I am worried I don’t know what will happen next.

Has anyone had the coil fail? Any advice? Attached is a report from my last op.

[AskEveTeam]

Hi Liz,

Thank you for your post. We're really sorry to hear that you're having a drawn out and worrying time with regards to your gynae health.

We're pleased to hear that your urology and gynae teams are communicating with each other and in this case you're not being treated as just a gynae patient.

The Mirena coil failing would mean that it isn't/doesn't keep the hyperplasia at bay, i.e. it develops into hyperplasia with atypia. This scenario, as you know, is what would guide your teams towards a hysterectomy.

It isn't uncommon for patients with endometriosis to have organs to have adhesions, i.e. stick together, in your case it's the womb and bladder. Your medical teams and potential hysterectomy surgeons will be familiar with this situation.

If you'd like to speak to our Gynae Nurse Specialist once you've received your next lot of biopsy results, please do email [e-mail]

Best Wishes,

Team Eve

[AnzC]

I had atypical endometrial hyperplasia. Had hysterectomy and only when surgeon operated did he discover I had endometriosis. One ovaries stuck to womb and urethra was also stuck somewhere. The surgeon manage to seperate everything as I wanted to keep my ovaries. It sounds like you are in a good place if they have to operate as they already know what to expect. It sounds good that both the teams would be working together. It is a big operation. I didn't go for the coil option, I didn't want to go for biopsies and the worries every 3 months and doctors said risk is high. I am sorry to say I didn't really answer your question to the coil. It does not sound like a nice situation you are in.