When you are first diagnosed with endometriosis, you will quickly learn that there is a seemingly endless amount of non-surgical treatment and pain-management options.
You’ll also quickly learn that most of them are of limited use, short-term, or come with horrendous side-effects.
I want to talk about some of the more common treatment options, my experiences with them, and things to look out for.
Please note, I am not a doctor and nothing in this blog should be taken as a substitute for proper medical advice.
Pain drugs come in all sorts. You start with your basic painkillers like panadol, or their stronger cousins codeine, panadeine forte, and morphine. They all pretty much work in the same way, slowing down the pain messages travelling to the brain. Panadol is pretty safe to take and some doctors may in fact encourage you to take it every day. Codeine, endone and Panadeine Forte are not designed for long-term use, and may give you some nastier side-effects (constipation is a very common side-effect with these drugs). Morphine is even stronger, and the side-effects can be correspondingly worse. They can range to feelings of drowsiness to bizarre sensations of disassociation, trippy dreams an nausea and vomiting. When someone is suffering a really severe flare-up, these drugs may be of use, but also may have limited impact. They are also addictive, and you may suffer withdrawal symptoms when you stop taking them, and increased tolerance to them if you are on them long-term. I have not enjoyed my experiences with strong opiates. One particularly memorable occasion after taking endone, I lay in bed for four hours with wild, scary thoughts tumbling through my brain, unable to fall asleep but also feeling like I couldn’t move. HOWEVER, if you are prescribed these painkillers, giving them a try may really help you in easing your pain. My experience is not universal.
Another “beginner” painkiller is naprogesic, designed to relieve period pain. The idea is you start taking it before your period starts. It may be good for normal cramps but it didn’t do much for mine, and it’s no good at all if your period begins without warning or you have endo-pains when not on your period, as many of us do.
Naprogesic is not to be confused with norgesic, which is a combination of a muscle relaxant and panadol. It can help when your body is in spasm. My understanding is that it isn’t terribly strong compared to, say, panadeine forte.
Other commonly prescribed painkillers for endo sufferers include targin, tramadol and lyrica. Targin is a mixture of oxycodone, also an opiate, and naloxone, which helps to prevent some of the side-effects like constipation. Side-effects can include dry mouth, decreased sex drive, diarrhoea, restlessness, rashes, fevers and chills, amongst other things. I have not been prescribed Targin before so have no experience with it.
Tramadol I have tried. Also an opiate, it makes me constipated as heck and also makes me babble like a loon, shake, cry, experience muscle weakness and eventually fall asleep from exhaustion. I did not enjoy it very much. Others may experience greater relief and less nasty side-effects.
Lyrica is another one I’ve tried. Primarily an anti-consultant, it works by blocking pain signals to the brain. I didn’t find it terribly effective, but I was on quite a low dose. Initially I experienced no side-effects, but over time I began to develop pins and needles and later strong pains in my hands, feet and arms. Some people experience depression and even suicidal thoughts. If prescribed this drug, keep an eye on yourself and tell your doctor if you experience any of the side-effects.
Doctors may also prescribe anti-inflammatories. Ibuprofen is down the low-end of the scale, and relatively low risk. However, it may irritate the stomach, particularly if you already suffer a condition like gastritis.
If you get bored of swallowing pills, anti-inflammatory suppositories are a fun option. I was prescribed Indocid for a while. It’s a long white pill that you, well, stick up your bottom. Your bottom immediately wants to spit it back out, but you have to hold it in for half an hour before you’re allowed to use the loo. I didn’t get much help from this drug, but I did experience awful heartburn and chest pains while using it, so that one had to go too.
In addition to managing your pain, your treating specialist will likely get you on some form of birth control. There are many, many types. The main ones are pills, the implanon bar, or an IUD (intra-uterine device).
There are many types of pill with a variety of compositions. The two main categories are the combined pill, which usually mix oestrogen and progesterone (either real or synthetic, but usually synthetic), and the mini-pill, which tends to be just progesterone or a synthetic substitute. They have different ways of stopping you getting pregnant, but that’s talk for another day. In terms of helping you with endometriosis, they have a couple of effects.
The combined pill allows you to choose when and how often you will get your period. This can be a huge blessing if your pain is mostly centred on your period, as it allows you to deal with it more on your own terms. It may also reduce endometriosis pain. I was on Yasmin and later Valette and both helped reduce my pain for a while.
The mini-pill doesn’t usually give you that flexibility – you usually just take it every night. Sometimes it will stop your period altogether; sometimes it won’t. When I was on Visanne I had a small amount of bleeding for three straight weeks before the side-effects (a horrendous, painful rash all over my head and upper body) forced me off it. Now I’m on Provera, but I can’t comment on what it does as I’m also on two other contraceptives.
Speaking of…implanon. It’s a little bar that goes into your arm. I’d been using it to sterilise my ratties for years before I got it stuck in my own self. Going in it caused a large bruise (pictured below about six hours after insertion and about 24 hours after insertion) and was quite painful, and it is a little weird because you can feel it under the skin. After a few weeks, though, you adjust and forget you even have it. For me, when combined with my mirena, it’s done a really good job and I no longer have any periods. It lasts for three years. It is coated in progesterone which it releases slowly over time.
The mirena is a form of IUD. It’s a little plastic wish-bone-shaped thing that comes in a massive, off-putting box. It has little strings on it. It gets shoved up through your cervix and into your uterus, with the strings hanging down through the cervix into the vagina so they can be used to pull it back out. I had mine inserted under general anaesthetic as I was having surgery anyway. I’m not sure I’m brave enough to have it done while I’m awake. By itself, it helped a little, but for me it needed to combine with the implanon to be truly useful.
All hormonal birth control methods have some negative side-effects. Some people may not suffer any of them; some may suffer most. Most common are bloating, pelvic pain (oh, the irony), low mood and reduced sex drive. Pills with a higher oestrogen content may see a reduction in body hair and give you clearer skin, but unfortunately can also encourage more rapid growth of endometriosis. I noticed a huge difference when I came off Valette, even after the Visanne rash had cleared – my skin got really spotty and I was suddenly epilating weekly instead of every six weeks. I did not like it. Progesterone, on the other hand, slows, reduces, and sometimes even reverses the growth of endometriosis, so that’s pretty tops.
Just remember, not all birth control is created equal, and different people will react differently to each type. It’s a frustrating process finding one (if any) that works for you, but don’t be put off from trying new ones because of a bad experience.
What have you been prescribed, and what have you found helpful? Have you suffered negative reactions to any medication?