To not use birth control?

[Mimmy352]

Hi! In the process of being diagnosed with endometriosis (hasn’t been diagnosed yet but seems to be most likely cause of my problems) and one of the treatments is going on birth control.

I don’t want this for a number of reasons:

1. Birth control side effects are the same as what I’m currently experiencing so what’s the point
2. The pain and heavy bleeding I’m experiencing is manageable. Annoying, inconvenient but manageable
3. BC has historically not worked for women in my family (different types)
4. My fertility is potentially already negatively impacted, so I’d rather not mess with my natural system by introducing hormones that “aren’t mine”

My preferred method of contraception is condoms, and I’m quite happy with this. But everyone around me seems to think I’m crazy for not wanting to use BC. I’m not one of these “natural is best, essential oils cure cancer” people, but I feel it’s ultimately up to me to decide what I’m comfortable with doing to my body.

This is a question for your dr really OP.
People react differently to hormonal contraceptives. Some kinds, especially something like the progestogen only pill, often reduce the thickening of the endometrial lining that normally happens every month. This is why one of the side effects can be very light bleeding on the ´break’ week or no bleeding. For someone with endometriosis, that can mean less bleeding inside and outside the uterus, meaning less pain. And that could also possibly prevent ongoing damage to structures inside your pelvis from the endometriosis sites, which could help you preserve your fertility for when you want to TTC. That’s the theory at least.
It depends on what kind of hormonal contraceptive your dr is suggesting you try, but it’s something like a pill or a ring then you can stop it quickly if it doesn’t have a helpful effect or you get side effects that outweigh any benefit. You can keep using condoms anyway.

But obviously you are in charge of your body and no one is going to force you to take hormonal contraception if you don’t want to. You do seem to be assuming you will have a negative experience with it, when actually lots of people have a positive experience of hormonal contraception.

The reason I think it will be negative for me is because it never worked for anyone else in my family and because the potential risk of mood swings/depression

I already struggle quite a bit with depression, and have been suicidal in the past (not anymore luckily!). That experience was terrifying, and I’m just not willing to take the risk of hormonal contraceptive putting me back there

YANBU to not want to put artificial hormones in your body, that is totally your right to make that decision. As to your individual reasons, 1 and 3 are about other people on birth control not you. You can't know the effect something will have on you by knowing the effect it had on someone else. Reactions to medication are very individual.

The pill gives me migraines so I can't take it. I have a long history of reacting to medicines and also of medicines just not working for me. I have recently had a coil fitted to cope with unmanageable heavy bleeding. Even the doctor agreed with me that with my history it was less likely to work for me than most women but I wouldn't be offered a hysterectomy until I'd tried it. Much to our surprise it's actually worked for me and after a couple of months of even heavier bleeding I don't get periods at all. So, having been very skeptical, I am so glad I've tried it because I've avoided a hysterectomy, for now at least.

You can't possibly know how your own body will react to something without trying it yourself. But it is perfectly reasonable to choose not to try it. Your body your choice.

This is a conversation you should have with your dr. They do know all about the different side effects that are associated with hormonal contraceptives. They will be interested in your family history. It might be that they would recommend something like the mini-pill over a mirena coil or the depo provera injection in your case because it can be stopped quickly if need be. They might suggest more follow up appointments to check that your mood is not affected and act quickly if it is. They might suggest continuing with condoms as your main contraception and not assuming the hormonal birth control with prevent pregnancy in your case. Talk this stuff over with people who know most about it. You could even make an appointment with a sexual health clinic if you wanted to talk to another health care professional about it. They might not be experts in endometriosis but they definitely are experts on contraception.

I should probably also mention because it’s a huge factor

The BC would be for the endo symptoms only. I’m not trying to prevent pregnancy. I’m not actively trying to conceive at the moment, but I am in my late 20s and financially stable, so becoming pregnant would be just fine. Condoms are working just fine to prevent pregnancy as it is

Another thing to remember about side effects and ineffectiveness is that people talk most about negative experiences. No one sits around talking about how great they found the pill or starts posting about it online. People who have positive experiences just happily keep doing what works for them and it rarely comes up in conversation.

So yeah, thinking about TTC in the near future is a huge factor in this decision. I wouldn’t try anything that takes ages to stop working or get removed - like an implant or coil, if I wanted to be pregnant in the next year or 3 or even 5 (for a coil). That might need to be a conversation you have with your partner so you can go into your medical appointments confident in your choices. Again, your dr will know how long fertility is usually affected for when stopping different kinds of contraception. It might well be that hormonal birth control is something you only want to try after having a baby or completing your family.
Your dr might also have some information about how your fertility may or may not be affected by the endo and that might have an impact on your timelines too.

You have every right to decide what you want to do for your body.

Having said that, your specific arguments against birth control are mostly not good ones.

1. Birth control side effects vary massively from person to person so saying they'll be the same as what you experience now is wrong.
2. If the pain and bleeding is manageable is fair, unless your doctor is concerned it might get worse? I don't know obviously but could imagine that.
3. Family history is relevant, but not definitive.
4. Birth control does not "mess" with fertility.

That's not to say you have to take BC if you don't want to but at least make sure you're aware that it's a choice you're making, not based on any medical truth. Certainly, I chose not to have my tubes tied because I didn't want to have anything artificial left inside me - that was not a valid medical reason but it was my choice and I'm fine with that choice.

Hi OP, I have to agree with PP and say yes it’s your choice but your reasons against it don’t mean no birth control would work for you? Discuss with your doctor but for example the coil the affects of it are quite contained locally rather than the pill which can more commonly cause mood swings etc.

May be worth discussing options with your GP if you are open to participating in the discussion and considering it, but if you’re adamant you don’t want to take anything that ultimately that’s your decision. Just tell your GP you would rather deal with your symptoms as is :)

Did you not get offered tranexamic acid for the heavy bleeding?

I made the same decision as you when they suspected I had endo. The consultant booked me in for exploratory surgery and gave me a prescription for the pill. He was really forceful and I struggled to articulate that I didn't want any of those things. I'm autistic and the pill makes me feel absolutely dreadful.

I ended up ringing my GP when I got home from the appointment and getting the referral pulled.

the coil the affects of it are quite contained locally rather than the pill which can more commonly cause mood swings etc

Plenty of people experience wider systemic side effects on Mirena too, unfortunately.

Why not discuss with your GP, consultant or sexual health clinic rather than a few random people’s experience on the internet? And you said “everyone around me…” - it’s no one’s business but yours and your partner if you have one.

@ThreeLittleDots There are actually no hormonal side effects to an IUD, you can find this information directly from the NHS website. It’s one of the main advantages of this in comparison to the pill/injection. It does have it’s own disadvantages such as it can cause a heavier bleed while it settles, but in terms of the hormonal aspect it is advertised as no side affects. That’s not to say a tiny % may argue it has, but that % is so small it is negligible enough that medically they can say it has none.

It is also probably one of the only contraceptives that has no lasting impact on your fertility which I know the OP mentioned being concerned about. You can fall pregnant as soon as it is removed.

Several of my friends got pregnant in the same circumstances as you, all had been told it was about a 1% chance of conception per cycle.

If you don't want contraception, that's absolutely fine obv, but be prepared for a pregnancy if it happens. Drs are crap at guestimating fertility IME.

Are you getting mixed up with the copper IUD? Merina hormone coil which you get offered for heavy bleeding can have side affects
www.medicalnewstoday.com/articles/birth-control-mirena-side-effects#:~:text=The%20most%20common%20Mirena%20IUD,contact%20a%20doctor%20for%20advice.

But you are using birth control! Properly-used condoms are a perfectly valid method.

@Mimmy352 As you can tell from my username I have endo. In fact I was on the pill from aged 16 to 26 which reduced the symptoms of my endo to a much more manageable painful period. So this is me saying the pill was freaking great for me. I had to come off it due to migraines with aura and then I was in complete agony and my endo management journey began. I wasn't diagnosed at that point but that was over 20 years ago.

Just because the pill was problematic for the other women in your family, doesn't mean it won't be beneficial to you.

If this is endo then you run the risk that the endo gets worse, the pain might be the same but the deposits can increase and become deep tissue ones. I think the only way to monitor this would be with MRIs to see if the endo is progressing. I am not sure how easy that would be to get it on the NHS, one maybe but two or more? Not sure. I have been both NHS and private for endo management. If you informed of the risks either way then the decision for your body is down to you.

How does the pill help endo?

"The Pill works by suppressing ovulation and affects the production of female hormones in the ovary. The hormones in the Pill cause the uterus lining to become thinner, causing periods to become shorter and lighter, thus reducing endometriosis symptoms"

Also the same situation as @PinkFootstool after extensive treatment for endo including surgery I was told categorically that I would need IVF. I was on the mini pill following 6 month chemical menopause (GnRh analogues) as my endo is aggressive, came off the mini pill and was pregnant within the month.

yes the condoms are to prevent pregnancy, the pill is being suggested to treat potential endometriosis which can render you infertile as well as in agonising pain. It is the first step always to treat endo.

No, I’ve never even heard of tranexamic acid. I’ll look into it.

Contraception will stop your symptoms, slow the progression of endometriosis , protect you from pregnancy and improve rather than reduce your future fertility. Your reasons not to are pretty uninformed. But of course it's your choice.

oh and reduce your ovarian cancer risk

Did you not read the bit about her history of depression and suicidal ideation? The mini pill made me feel mentally unwell very quickly.

But she hasn't tried any yet. I'm sorry to hear about your experience, but she's eliminating a lot of possible benefit because side-effects might happen.