TW: weight gain/loss, disordered eating, suicide, depression.
I apologise for my delay in posting, dear readers. Yet another cold has been kicking my backside.
I am not a doctor. Nothing in this post should be considered to be medical advice.
I know for sure that I am not the only endo-haver out there who has had a medication, experienced horrific side-effects, and decided that it simply isn’t worth it, or had second thoughts about whether they should have surgery or not. These days, I’m relatively confident in making my own decisions about medication and treatment, occasionally in defiance of doctor’s orders. However, for younger, less confident, or less experienced people, this might seem a very daunting decision, so I want to write a bit about how you make it.
First, let’s talk about medication or surgery and whether or not you want to take it/have it or stop taking it.
If your doctor is suggesting you go on a new medication, you should ask the following:-
- What do you expect the medication/surgery to do? (e.g. reduce pain, remove pain, increase fertility, etc)
- How does the medication/surgery work? (e.g. by blocking nerves, by slowing endo growth, by changing hormone levels, removing endometrias)
- What are the likely side effects?
- What are the possible but unlikely side effects?
- Which side effects should I just deal with, which should I see a doctor about, and which should I go to emergency for?
- How long will it take to work/relieve my pain?
- If it doesn’t work, what are the next steps?
- If I don’t take this medication/have the surgery, what will happen?
- What are the alternatives?
- How much does the surgery/medication cost? (I hate that this question is relevant, but it is. My current meds are more than $350 every six weeks, which may be a bit more than some people can reasonably afford).
A good (or legally savvy) doctor will tell you stuff like this without asking. Most medication also lists all this stuff on the leaflet that comes with it, but it’s good to hear it from your doctor (and ensures that they are familiar with what they are prescribing you).
Pay attention to the possible side effects. Just because a side-effect sounds appalling, don’t assume it will happen to you – remember, the worst side-effects tend to be rare. However, do look out for effects that will be particularly problematic for you. If you have thyroid issues, diabetes, or PCOS, watch out for medications that mess with your weight. If you have a history of disordered eating, pay attention to side-effects that may cause you to lose or gain appetite, either one of which could cause a relapse for you. If you have a history of depression or suicide attempts, look out for medications which exacerbate those. If you have concerns of that type about the possible side-effects, raise them with your doctor. Explain your history, ask how you can manage the symptoms, and talk about what to do if they become an issue.
If your doctor does not acknowledge your concerns or does not take them seriously, go and get a second opinion before taking the medication. Mental health is serious and you should not mess around with it.
Bear in mind that side-effects for surgery are likely to be far more long-term and less easy to reverse than side-effects for medication.
Many people also ask their peers in support groups or forums online about their experiences with the medication or surgery. This is all well and good, and can be useful if you are experiencing some unusual effects and want to check you aren’t alone. However, remember that everyone’s disease and responses are different. Six people could take the same medication and have extremely different responses. Just because others in a group have had bad experiences doesn’t mean you will. Likewise, just because others have liked it doesn’t mean you will. Ask, by all means, but more to be prepared than to determine whether or not you will take it.
How you actually decide is based on what you value most. Is the doctor really hopeful about the meds helping you? How concerned are you by the potential side-effects? Do you trust the doctor prescribing the medication? In the end, you have to do a cost-benefit analysis and decide if you think it is right for you. Generally speaking, I take the approach of “give it a go” with medication, because I can always stop it. With surgery, I am now fairly cautious, because my first one really messed me up. That being said, I also had three surgeries between November 2017 and October 2019. I kind of let my level of desperation for pain relief be the guide on whether or not I have surgery. Doctors (most doctors, anyway) don’t tend to jump straight to surgery., so generally it is a “desperation” sort of remedy. However, I don’t know if that is necessarily the soundest reason for making a choice. Please do consider it all carefully, even when desperate.
Now let’s turn to what you need to consider when deciding to discontinue a medication. For this, there are really only two questions, unless your doctor calls you in a flap saying something has changed (like they’ve found a cure, or the medication is actually killing you). These questions are:-
- Is it working?
- Can you deal with the side effects?
Sucktastic as it is, I have yet to encounter an endo medication that doesn’t have a side-effect. It’s currently just one of those things that are part of our very annoying fate.
Now, if you answer the above two questions “no”, then the answer is that you should speak to your doctor urgently about discontinuing the medication. Now, please don’t take this as medical advice, but if a medication is giving me no relief or improvement and the side effects are driving me mad, I will just stop taking it and tell my doctor, not ask them. This is something I am particularly likely to do if getting in to see my specialist is going to take a while. I’ll give you an example: Visanne, for me, gave me no relief whatsoever, and in fact made me feel like my pain was worse. It also gave me a rash of gross, painful, itchy, pustules across my face, neck, shoulders, back, chest and scalp. It was horrible. My specialist was a three-hour drive away and appointments would be a few weeks to get. I just stopped taking it.
It becomes more complex if the medication is actually helping your pain, but also causes you horrific side effects. At that point, I would generally wait to consult with your doctor if you possibly can, and compare your pain levels on the medication to your pain levels without it. Which is worse for you, the side effects, or the pain? What are your alternatives if you stop this medication?
Ultimately, I can’t tell you where to draw the line. You need to choose what’s best for you, and what you can or can’t live with. However, I hope that this post has given you some guidance about what to factor into your decision.
Have you had to decide to stop a medication? What drove your decision? Is there anything I haven’t considered? Let me know in the comments!