Endometriosis - holding on, searching for a new doctor

Because the gynecologists refuse to do any further operations, and refuse to replace the out-of-date Mirena, nothing has changed. I am holding on for now, but I am not at all happy. Or comfortable. The pain grows with every month. The monthly bowel bleeding continues.

My current doctors in Germany don’t care, and refuse to treat me.

I have to stay on the combination of Visanne and Mirena for as long as I can hold out against the pain and secondary symptoms.

Full hysterectomy to fix the endo - not allowed

My ultimate solution is to remove both the uterus and ovaries, as both are contributing to the growth of both the endo and adeno.

Removing just the uterus, won’t stop the growth of the endo in my pelvis and inside the bowl, and won’t get rid of the cysts in the ovaries which periodically and painfully burst.

Specialists here have outright refused to take out the ovaries on the grounds that I’m still far too young to go into a permanent menopause, even with 10 years of hormone replacement therapy. The earliest they will consider it, is when I turn 45.

I need to monitor the bowel symptoms. If they seem to become blocked from scar tissue, or have stronger/more regular bleeding from the endometriosis growths inside, then it’s been recommended that I have a bowel resection and hysterectomy (leaving the ovaries in). But as this is a huge and risky operation, with both extreme short and long-term risks, my pain levels (or blockage levels) need to be obscene before they will consider it.

So I have to hold out as long as I can.

Replacement Mirena - not allowed

Although, my current Mirena is now ‘out of date’ (the hormone levels released into the uterus are lower than when the coil is new), my gynecologist here has told me to simply leave it in, while the Visanne seems to have shut down normal period bleeding. She says there is no point upsetting the balance when it is currently ‘working’.

She believes that the pharmaceutical industry put a ‘use-by’ date on the Mirena, not for health risks, but to make more money - it’s extremely expensive to buy it and to insert/change it every 4-5 years.

I find it sad that there is so much emphasis on capitalism in the health and medical industry.

Important to note that my endometriosis specialist surgeon in Australia said while it could be left in longer than its use-by date, the slow-release hormone levels drop as time passes, and they need to be high enough to prevent the adenomyosis growth. That is why it should be replaced every 4 years.

Update 2026

I found a new surgeon who performed a partial hysterectomy in 2015 (age 44) due to ongoing extreme pain and constant bleeding. The Mirena had been in for so long that the cervix had fully blistered and was covered in cysts. There was quite a risk of that turning cancerous, so they cut that out when they took the uterus. This surgeon also refused to take out the ovaries as I was too young. But he also said I should stop Visanne as it caused massive temporary lymphedema and the permanent lipedema.

I kept bleeding from the bowel every month, as with ovaries still in, I still had a hormonal cycle. A newly opened endometriosis clinic in Leipzig in the same hospital as my rheumatologist and breast cancer specialist agreed to allow the ovary removal in 2023 (47). While the bowel bleeding has continued (it is likely caused by the systemic sclerosis and was pressing on the endometriosis in the pouch of douglas), it is no longer linked to the monthly cycle and is a lot lighter. It is being monitored by a gastro clinic, where I have to do a colonoscopy every few years.