Hello Lupron

After 9 months of trying the Visanne tablet in addition to the Mirena IUD to control my endometriosis growth and cyclical bleeding from my bowel, The gynecologist has switched me to a 6 month course of Lupron (technically, Enantone-gyn). It's a cancer treatment drug that is also used to shut down the hormone production system in women, pushing them into a chemically induced menopause.

I've already been on the related GnRH agonist medication (Zoladex), so I know what to expect. Of course, you get all of the menopause side effects - poor temperature regulation, hot flushes, moodiness, loss of libido, plus a host of others not normally so strongly associated with menopause. If Zoladex is anything to go by, I'm expecting serious nausea, dizziness, headaches, weight gain, and a significant increase in fibromyalgia pain. It does stop endometriosis growth in its tracks, and can shrink the size of the adenomyomas (temporarily).

Unfortunately, the bowel endometriosis symptoms appeared less than 2 years after my last 6 month course of Zoladex. So this is a very short term treatment.

I was given the choice, wait for another 4-8 weeks until I can get an opinion from an expert in endometriosis about the next step (oopherectomy, laparoscopy, hysterectomy or not), or start it now. I decided to start it now, a month before my appointment in Berlin for two reasons - it just might stop the bowel bleeding, and it will give the specialist another bit of information to work with.

I'm also keeping the Mirena in for the time being - it's due for replacing at the end of the year, so they don't really want to take it out, just yet. Especially as I may need an operation of some kind or another (do it all in one hit!)

Right now, my tummy hurts at the injection site, even though it was a tiny needle. It was just a powder/liquid mixture, unlike the solid slow-release tablet of Zoladex, and therefore didn't need any local anaesthetic. But I think my poor fibro-riddled body hates injections, it's already going blue.

Of course, I'll add updates as I experience side effects, and success (cross fingers).

Hopefully Lupron will surprise me and be less nasty than Zoladex.

Pain updates from around the web

A collection of blog posts, articles, and tweets from around the web. Some will be new, some a little older, but new to me.

 

Elagolix Phase IIb clinical trial has begun

An oral alternative to the GNRH agonists for treating endometriosis and fibroids. Early tests have shown the new medication to be as effective as the injected forms.

 

Pain management guidelines launched in the UK

For dealing with elderly in pain, these recently released guidelines should help physicians get a better picture of their patients' pain levels, types, medications, especially as the elderly often play down their pain and have multiple problems. Put together by the British Pain Society and the British Geriatrics Society.

 

Pain in the butt or leg - Yoga Journal

Yoga may help in treating sciatica, but you will need to modify your practice based on the cause of sciatic pain (ruptured discs and piriformis syndrome are very different things).
Related: When stretching is not good for lower back pain

 

Sleep like a baby - Zen Habits

Ideas on how to get better sleep - something I certainly need!

Anger and pain

The last 12 months has been very trying, and has led to me becoming a very angry person.

We've been looking for a new apartment for well over 8 months now. About 10 that we were very interested in, the agents have cancelled viewing appointments, or simply not shown up.

One where we were 'first in line', there 'were no others looking that weekend', we were told to give them our decision on the following Monday, was given to someone else on the Saturday before. It caused both of us major depression and much anger over Christmas time.

A mistake at work has led to me losing one of my classes (it was forgotten to be entered into the course book). Which means I have lost quite a bit of income. Grrr.

Some of my well earning articles are often stolen - copied and placed around the net, both the full articles, and in spun spam comments. So many lost days filing DMCA takedown notices! Plus the lost traffic as the original gets penalised by Google for being duplicate content. Argh!

Family problems and the behaviour of some family members back in Australia often make me furious - I can't do anything to help my mother physically, and powerlessness leads to anger, often directed at myself.

Of course, anger causes tension in the body, and that directly causes an increase in muscle and nerve pain. Poor sleep and insomnia adds to the increasing pain cycle. And to complete it, pain increases lead to depression and more anger, at not being able to do the things I want. To add to problems, it means my weight is increasing again, leading to more depression and anger.

So, how to process all this anger and reduce pain?

The cats help somewhat, however, because they are still 'kittens', they also cause problems of their own (climbing the walls, destroying the wall paper, chewing through cords, etc.).

It's been suggested that I try:

• meditation
• yoga
• tai chi
• CBT 
• other enjoyable activities

How do you deal with anger?
How do you prevent it from affecting your health?

New endometriosis medication - Visanne

Different countries do things differently.

In Australia, the specialist surgeon had recommended a 4 yearly cycle - laparoscopy to look for new endo, visually check the adenomyosis growth, scrape and clean out the uterus (D&C), 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).

Here, prophylactic laparoscopies (just to check on things) are avoided like the plague. And I still have a year on the manufacturers recommended 5 year replacement of Mirena.

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 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 and stopped
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 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.

Side effects notes after 9 months

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. I can't put the depression down to Visanne - too many other (bad and difficult) things have happened in the last year that would easily cause depression on their own, let alone in combination with such a medication. Plus a constantly shaking house doesn't help!

The loss of libido has been extreme, as has the skin thinning - it rips 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.

There hasn't been a noticeable increase in headaches or other types of muscular/joint pain after the first couple of months. After the first month of nausea, I had only a few days here and there where even the thought of eating turned my stomach. The increase in back pain is consistent with an increase in weight, and too much time spent sitting. Switching between a standing desk, sitting and an exercise ball, and doing my sciatic stretches helped keep this problem mostly at bay.

Sciatica medications quiz

How much do you know about medications available for sciatica and other inflammatory conditions? Take the quiz to find out! I've been fighting off a sciatic flare for the last couple of months. Sitting for long hours while writing, not much exercise, worsening endometriosis pain, and extremely hot weather have combined to land me on my butt more than normal. It's frustrating to see how quickly and how far you can backslide in health, fitness and weightloss. As soon as you stop moving, and you let your diet slide, the weight piles back on and you feel crap. So far, natural preventatives for sciatica have managed to keep the pain at bay - on the brink of flaring, but not quite. Heat packs, while wonderful during cooler weather, are too much to handle when it's well over 30C inside. I'm hoping that a new mattress will also help - my current futon is as flat and hard as a door. The new one arrives on Friday, and I am looking forward to a much more comfortable sleep!

Sciatica - medication options for sciatic pain relief

Sudden abdominal pain

In 2008, they discovered that I have polycystic ovaries, a common occurrence for women my age. But I suspect I had them several years earlier. In the routine ultrasound, checking on the adenomyosis, they found one cyst had swollen to the size of the ovary, but it was gone on the next ultrasound, many months later.

The surgeon recommended a wait-and-see approach. If a cyst gets too painful or too large, then they will investigate further, and potentially operate. But normally, they go away naturally, during one cycle or another.

Sometimes the cysts are painlessly released, other times they burst painfully. I suspect I had another cyst burst this month. The adenomyosis symptoms were worse than usual - heaviness and soreness in the abdomen, bloating and moodiness. Plus there were two days where it hurt to move and especially walk - spiking pain lanced through my right side with each step. Tiredness, crankiness, general pain (fibromyalgia/neuromas) and my immune system were all worse than usual.

Two days ago, it felt like something burst as I stood up. Yesterday, the bloating (and associated weight) had reduced, and pain levels had decreased. Today, is a bit better still, although I'm still awfully tired. It is similar to the sharp right side abdominal pain I had in 2002, where I did go to the hospital, but they couldn't see anything unusual (at the time I was reassured it was not the appendix dying).

When a cyst bursts, there can be fluid (or blood) inside and around the ovary. As this has a chance of getting infected, I'm going to keep a close eye on my symptoms.

Focus: breathing

Flying time

Where has the month gone? It's amazing how quickly it flies by these days. I seem to spend most of my time in front of the computer, writing, researching or just playing, trying to distract from the pain. Unfortunately, so much sitting is making the sciatic nerve twinge again. The massage pillow and stretching is keeping it at arm's length, but I'd like it to retreat further. I'm considering trying a few pilates exercises, but am worried about the muscle condition required to hold the poses/stretches.

I'm heading for another operation (my sixth for endometriosis/adenomyosis), it's been nearly 4 years since the Mirena was put in and the hormones seem to be running low. It feels a little like there might be some endometriosis again as the pain pattern has changed. Finding a surgeon is nigh impossible, and even one gynecologist was unwilling to take on my case (too difficult perhaps). I'll be seeing a different one, organised through the insurance company, early next month. Crossed fingers that she'll see me as a fun 'project', not an impossible challenge.

Update July 2012

My new gynecologist, without understanding what my current treatment regime is (Mirena, replace in 4 years under general anesthetic and check on adeno at that time), suggested exactly this. I can't be happier. She will refer me to a specialist surgeon later this year. It's such a relief to find a doctor who understands (mostly) the conditions, and also the recommended treatments.

Re-balancing

It's hard enough to maintain a balance in a perfectly healthy body, but juggling multiple jobs, returning to writing and trying to keep up with hobbies leaves me rather lop-sided. I need to regain focus, simplify, focus on regaining fitness, losing weight, regaining flexibility and balance.

Unlike most chronic pain sufferers, whose symptoms often worsen in cold fronts, my symptoms flare as the seasons turn warmer. A 20°C jump in one day can flatten me, nerves screaming, muscles and joints aching, sight spinning. It seems quite a normal occurrence in spring.

I would love to make use of the gorgeous weather, hike and see the spring flowers poking their heads through the ground, but I'm limited to getting myself through each work day, occasionally cooking, and sleeping as much as I can.

Before my last Zoladex treatment, I underwent a bone density scan to check I was ok to have this treatment for a second time - Zoladex decreases bone density significantly. 2 years after the treatment, probably thanks to walking my feet raw on regular long hikes, my bones are better and stronger than ever. This is despite a continuing extremely low vitamin D level.

I'll be juggling for a while longer, making a little progress in hobbies, here and there (like finally hanging my kakeshita kimono). Next, to sew a larger heat-pack, and try to reduce those pesky symptoms a little.