Visanne for endometriosis

Different countries do things differently.

In Australia, the specialist surgeon had recommended a 4 yearly cycle - a prophelactic laparoscopy to look for new endo, visually check the adenomyosis growth, scrape and clean out the uterus (dilation & currettage), and replace the Mirena IUD. According to this surgeon, the hormone levels in the Mirena start dropping after 4 years, and it’s noticeable in adenomyosis patients (increased pain and heavier, longer bleeding).

Here in Germany, prophylactic laparoscopies (just to check on things) are avoided like the plague. And I still have a year on the manufacturer’s recommended 5 year replacement cycle for the Mirena IUD.

So, the surgeons have suggested I try a new medication, specifically for endometriosis - Visanne.

From what I have read, Visanne has had excellent results in many endometriosis patients, getting rid of pain and shrinking lesions. Of course, the usual side effects of synthetic progestin are often reported - acne, depression, loss of libido, weight gain, etc.

It’s quite a gamble for me, because Beyer warn adenomyosis patients that bleeding can increase. This would not be good for me - this medication is meant to stop my bleeding!

Even with the Mirena, I bleed 10 days in the usual cycle. The Mirena is meant to stop it completely.

The surgeons are hoping that the double dose of progestin, from the Mirena and Visanne, will work. I hope so, because the adenomyoma cysts are growing, becoming increasingly painful, and causing other problems with other organs in my abdomen.

Crossed fingers that this will work!

My plea to women, mothers and doctors everywhere - do not ignore period pain! Endometriosis can grow to extremes, develop adenomyosis, and cause life-long problems and chronic pain.

The number of medications for endometriosis that I’ve been on, easily number over 30, and that’s before I was diagnosed via laparoscopy!

Update: 2 months in

The first month was a bit rough - nausea for over 12 hours, starting 1 hour after taking it. But over time that has subsided (it took about a month). Breast soreness was much worse before my periods. I’m certainly more moody, with the fibro and sciatica playing up more. But that could be due to other non-related reasons too.

The first bleed while on Visanne was a short one (one 7 days, instead of 11), at the lower end of my ‘normal’ range. I don’t know whether Visanne shortened the time, or whether it was just my natural variation. Cramping and volume seemed unaffected.

I’ve just started my second, with the normal amount of abdominal and back pain. So much for it stopping the bleeding completely, although they recommend that the body takes three months to get used to the medication.

Update: 4 months in

I skipped one month, and the following month I bled only for three days. I did have cramping and anal bleeding a few days before each time when I was due, but a sigmoidoscopy didn’t find anything conclusive. However, the surgeon is convinced that the endo is back, this time through the bowel wall.

We’ll wait another 3 months on Visanne, and if this completely stops my periods, then I’ll stay on it. Otherwise, she will consider sending me for my 6th operation for endometriosis, this time with a bowel resection.

Update: 7 months in

The last three months have been period free, although not pain free. I still have pain from the adenomyosis which is pushing into the bowel. Plus I bleed from the bowel for a few days when I’m meant to have my period. The Visanne (plus Mirena) is not controlling the endo-regrowth, especially now that they believe it’s inside my bowel.

A chat with the head surgeon confirmed my fears - a bowel operation won’t fix the problem, and in fact will create longer-term issues. He wants me to consider a full, radical hysterectomy - removing the source of the problems (ovaries and uterus). It’s been 23 years of hellish periods, with symptoms really only worsening. Although I’m very young to be going into menopause, I think I will opt for this solution. In May I speak to the gynecology specialist again.

Update: 9 months

The gynecologist has refused to listen to the surgeon and bowel specialist, saying I’m too young for an oopherectomy, and I need my female hormones (estrogen) to prevent osteoporosis. Unfortunately, she has completely discounted the worsening bowel symptoms.

Instead of staying on Visanne (it’s not controlling the growth of the likely bowel endometriosis), she has started me on a 6 month course of Enantone-gyn (Lupron). It’s the sister medication to Zoladex, which I have already had for 9 months. So, back into a chemically induced menopause, which will hopefully reduce the bowel endometriosis bleeding, at least until I seek another opinion, this time from a specialist endometriosis clinic in the capital city.

A growing side effect of the Visanne (and Lupron) is extreme levels of water in my legs (lymphedema). I’ve been prescribed compression clothing to try to combat this, and regular lymph drainage massage.

Update: 2.5 years, 2015, stopped Visanne

A second endometriosis surgeon specialist, this time a bowel endometriosis specialist agreed, a partial hysterectomy was the best option, also to remove the endometriosis that had grown since the last operation in 2008. However, he also refused to take the ovaries out, as I’m “too young to go into menopause”.

With no uterus, the adenomyosis will no longer be a problem. But the period hormone cycle will continue, which means the endometriosis inside my pelvis will keep growing, and bleed internally each momth. He hopes that without the uterus contributing to the total hormones, this will have less of an effect.

However, because of the massive lymphedema in my legs and now torso, he told me to stop the Visanne. One month later, the lymphedema was completely gone - Visanne was clearly the direct cause of the lymph problems. But the lumpiness and pain remain - that is permanent lipedema.

Update 2016: Several years after writing the above updates and a year after stopping Visanne, I attended the lymphedema clinic in Baden-Wurttemberg (Foldiklinik). The specialists there diagnosed me with pure lipedema - a lifelong structural change to my fat cells and where they are stored, most likely triggered by the hormones in Visanne and/or Lupron.

Update 2017: And worse, two years after stopping Visanne and having the Mirena removed, I developed two types of breast cancer. Both of which the specialists agree were likely also contributed to by the many years of hormones in the pill and endometriosis medications.

Update 2023: I was finally granted an oopherectomy (with more endometriosis removal) which has reduced the bowel bleeding, but not completely stopped it. It seems that the pressure and inflammation caused by endometriosis growth around the bowel interacted with the auto-immune problems there (spondyloarthritis/systemic sclerosis) to tear the skin whenever anything moves past.

Lasting side effects

Overall, I’ve put on about 6kg, but not all of that can be attributed to Visanne. I have craved sweet foods much more often in the last 9 months (and salt rarely, something almost unheard of for me!) Depression can contribute, as can reduced activity. And gabapentin (fibromyalgia) can too. I can’t put the depression down to Visanne - too many other (bad and difficult) things have happened in the few last years that would easily cause depression on their own, let alone in combination with such a medication.

The weight gain has not been in proportion to the size gain in the legs, butt and upper arms - the lymphedema and lipedema, was solely and directly caused by Visanne. Unfortunately, the lipedema is permanent and disabling. Any amount of point pressure, such as a finger press, is extremely painful. I bruise easily. The size means no clothing fits. It’s hard to walk. And the wrongly stored fat cells are a haven for inflammation, exacerbating my auto-immune inflammatory disorders.

The permanent loss of libido has been extreme, as has the skin thinning - I tear and bruises very easily. I’ve had fairly constant cystic acne over my face, neck, back and shoulders, and a few on my belly, not typical for me, so probably a Visanne side effect.

I have also become quite anaemic. They had thought from all the extra blood loss through heavy periods and internal endometriosis, but it continued even after the hysterectomy.