Ending Lupron early - not successful

Lupron turned out to be worse than Zoladex, both in terms of side effects and in terms of controlling the endometriosis growths (it didn’t).

The first month

Although the menopause-effect is similar to Zoladex, which I’ve had twice before, the side effects are different.

The injection in the belly itself burnt, leaving an angry red mark for about a week, and a nasty bruise for another two weeks after that. I’m surprised that the pain of this ‘fluid’ injection at the injection site is actually worse than Zoladex, where a tablet is punched in with a massive needle. As a belly and side sleeper, this bruise is annoying - it’s too painful to sleep on my stomach!

Shortly after the first injection I developed diarrhea - quite a change for me. It stuck around for about 3 weeks, and came back with a vengeance after the second injection in the second month.

Hot flushes began towards the end of the second week after the first injection, and have only been increasing in both severity and regularity. Mostly towards the end of the day and during the night, again disturbing my sleep.

I can’t tell whether the increase in muscle cramps is directly related to Lupron, or a combination of the summer heat and the increase in fibromyalgia symptoms that always comes along with summer.

But the side effect that overrides every other, is the continuous horrendous headache. Daily, pounding, sight-affecting, nauseating, dreadfully painful headaches. I haven’t had my typical migraine aura, but they are just as painful as a migraine, and come with different vision problems - blurry and shifting focus.

It’s nigh impossible to work, and they are much worse in the evenings and when laying down. Somehow, I’ve managed to not let them show too much while I teach my three classes, but I’ve had to decline all additional work as well as all social activities. I certainly can’t handle being in a noisy room!

I’ve been told to tough out for at least 2 months, and possibly a third. But only to continue if there are noticeable improvements on the endometriosis pain/bleeding front. Some bleeding was expected in the first month - Lupron stimulates the ovaries, inducing a period in the first month, and then shuts them down into a menopause state, or so I am told. But I had my typical rectal bleeding after the second injection, which means it hasn’t fully shut my hormones down.

I’ll get a slight reprieve in the coming weeks as the teaching semester is over and I shift to half my normal workload. Private and business classes will continue throughout summer though.

The second month

Pretty much the same as the first month. But at least the weather was slightly nicer - not so crazily hot as during the first month.

However, the blinding, debilitating headaches continued and were constant. Darkness, stillness and quiet helps, but I can’t teach like that.

Worse, I live on a super-loud main road with trams and trucks that rattle the building every time they pass. I hate increasing my pain killer usage (it was very low), but it’s the only way to control my thumping head. The headaches have been, by far, the worst side effect of Lupron.

To add to the headaches, the muscles in my neck and back have become so stiff and sore through bracing against the pain in my head. Which creates a lovely feedback loop, amplifying the head pain.

Muscle/tendon pain, similar to fibromyalgia, increased a lot shortly after the injection, but slowly decreased throughout the month, although some muscles felt like they were always on the edge of cramping (my calves, achilles, and top of feet).

The hot flushes weren’t so extreme, probably due to the cooler weather. The edema (water retention) continued to be noticeable on my poor feet. The neuromas and my big toe, which I’ve had problems with in the last year, don’t like the extra pressure.

Unfortunately, it doesn’t seem to have controlled the endometriosis in my colon at all - it still bled at the normal, cyclical times, for the normal length of time. The hormones and the endometriosis have not been shut down. The specialist in Berlin recommended that I stop Lupron if it didn’t control this after the third month. We will see.

My weight has increased - the most common side effect of Lupron and Zoladex. The last time I was on Zoladex, I was able to get out and walk 2-3 hours per day. But with the demands of working and these darn headaches, exercise is impossible. I don’t eat unhealthily, but should probably control the sugar and carbs a little more than I have been doing.

It’s been good to eat seasonal fruits and veggies again. From winter to spring, almost only imported and refridgerated produce is available.

There has been no change to the abdominal or back pain while on Lupron, meaning that it is not controlling the regrown endometriosis nor the adenomyosis. Indeed, the size of my overly large uterus the obvious adenomyosis cysts that are in it have not changed on ultrasound - the entire back wall is still doubly thick as a normal person’s. Had Lupron worked, this would have decreased, and the cysts would have shrunk.

I’ll continue for the third injection, and see what the local gynecologist has to say. It is not worth continuing for the full six months as they had wanted me to.

The third month

My last month of Lupron is over and done with. And I’m not sorry to see it go.

I won’t miss the many side effects -

• the intense and constant headaches
• the cravings
• the weight gain
• the hot flushes in hot weather
• the moodiness
• the pain and bruising at the injection site

Lupron didn’t help

Lupron did not stop the bleeding from the endometriosis in my bowel. No point going through head-splitting hell for the full 6 month course when it wasn’t doing what it should have done.

So, back on the combination of Visanne and Mirena. They say it should stop all period bleeding, except for the monthly bleed from the bowel endometriosis, like before.

Mirena replacement required

My current Mirena is nearly out of date, so it will be replaced at the end of this year. Most likely the hormones that it releases have been too low a level for about a year (as happened with my previous one), which would contribute to the more rapid growth of adenomyosis, and regrowth of the endo.

But the doctors stick rigidly to the rules here - it has a recommended lifespan of 5 years, so they will replace it after 5 years and not earlier, unlike in Australia. My specialist surgeon there had said the hormones start decreasing significantly around the 4 year mark.

I’ve convinced them to put me under for a short time while they remove the old and insert the new. They wanted to do this without any pain killers, let alone a short general anaesthetic.

I did that once, and nearly passed out from the pain. I have never felt anything that bad in my life!

Update Nov 2013
The Leipzig UniKlinik gynaecologist has changed her mind, and refused to replace it until it was about 10-12 years old and waaaaaaaay out of date. This is a huge infection risk and won’t provide hormones to even somewhat slow the endometriosis regrowth! Also, they were adamant that it would have to be done in a chair without any anaesthetic, even a local.

While the head of surgery at the UniKlinik said he thinks a hysterectomy would be the best course of action and would absolutely do the operation himself, he is not allowed go against the wishes of gynecology department.

I’ve now found a good bowel endometriosis specialist surgeon at Martin-Luther hospital in Berlin, and we are now talking about the possibility of a hysterectomy if Mirena+Visanne doesn’t stop the monthly bleed.

Update 2022
If anyone is in Leipzig and looking for a local good endometriosis clinic, a very good one opened in St Georg hospital around 2020. They have been extremely supportive and were willing to do an oopherectomy as I was still having problems with monthly bowel bleeding after my partial hysterectomy.

Hello again Visanne

The re-start of the Visanne has been a bit rough, although I can’t point to the causes of the strange symptoms.

Dizziness, almost fainting, occasional headache, swelling, and complete lack of hunger. Could be stress, exhaustion (moving house), hormonal re-balancing, a virus (my immune system is shot) … any number of things!

After I’ve moved house, when the cats are resettled, I have a trip back to Australia.  I’ll be glad when the overwhelm of the last and next few months is over, and things are back to ‘normal’.