Did anyone not take birth control following excision surgery?

[Jessieb92]

Hello,

I'm due to finally have surgery to remove endometriosis in 2 weeks' time after 12 years of trying to get doctors to take my pain seriously. I've had an MRI previously which showed endo behind my womb and on my uteral sacral ligaments, but I also have bowel and bladder symptoms. I met with my surgeon today and he said he thinks my endo is severe and will likely require an overnight stay.

I'm feeling very anxious and overwhelmed, both about the surgery and how effective it's going to be long term. I've tried birth control pills in the past (most recently a progesterone only pill as I began having migraines on combined pill) to keep symptoms at bay but had horrible side effects (mainly depression, anxiety and low libido) so I really don't want to try any others. However my surgeon strongly advised I have a coil inserted during surgery to prevent the endo returning. He recommended trying Kyleena as this has a lower dose of hormone than Mirena. I'm not sure what to do. I know that progesterone only birth control effects me mentally but being in this much pain isn't sustainable. I just want to feel good mentally and physically but I'm losing hope that this is possible with endo.

Has anyone not taken birth control after surgery? And if so, how long did it take for endo symptoms to return? Am I being naive thinking surgery will be enough to keep me pain free?

Any experiences greatly appreciated 🙏

[Kirsty360]

Hey,I was advised to have the mirena implanted during my lap surgery but I refused. (March 23)

Like you, the side effects from the progesterone only pill impacted my mental health more than the physical effects of endo and wasn't worth me taking, so I stopped.

Even if your surgeon strongly advises it, it comes down to your needs and wishes. I'd say do the research and go with your gut instinct.

I wouldn't say you're being naive in hoping for some relief post op... Without meaning to worry you, my endo hasn't returned per se, but unfortunately I have 2 chocolate cysts back within 9 months. The pain is a lot less than pre op, but hoping to not let it get to a stage of complete agony again.

Best of luck with your upcoming surgery. Have plenty of rest and be kind to yourself ✨

[Hooplove00 in reply to Kirsty360]

I stopped the progesterone pill a few days ago, as it was affecting my mental health , causing bloating, and making my IC symptoms worse. I’m afraid my pain will get worse, but I feel almost normal? It’s been less than a week though. My OBGYN ( didn’t do the surgery) told me that I HAVE to stay on it, or I’ll be in pain? Although I feel better in the time being, I’m not sure if I made the right choice.

[Kirsty360 in reply to Hooplove00]

That's a good sign that after a few days you're feeling 'normal' but give it time to eliminate from your system completely then see how you feel. Weigh up the pros/cons of the pill and pros/cons of the pain, I am willing to take the physical pain over the mental pain, it was a no brianer for me.As for the OBGYN it's not them experiencing the illness or side effects of drugs, it's your choice at the end of the day you have autonomy to make capable decisions.

Interesting you mentioned IC becoming more of an issue, I have Fowlers Syndrome and found I was in retention more too 🤔

[Hooplove00 in reply to Kirsty360]

Very well put! I figured that if it gets bad…just go back on it!

That’s wild that both of us experienced the urinary aspect. I’ve been doing some research and the one I’m on is considered a diuretic. I literally thought I was crazy, until I had read about it.

[Kirsty360 in reply to Hooplove00]

That's all you can do, at least you have options to work with, hope you figure which one it is 🤞🏻 Wowzers, no wonder you're IC kicked off if it's a diuretic 🤦🏻‍♀️

We put our trust in the 'professionals' and it seems they don't always do their due diligence! I was placed on one that interacted with my epilepsy meds until I was the one to point it out!

Its sad we have to research and clue ourselves up just to be able to advocate and look after ourselves.

[Hooplove00 in reply to Kirsty360]

Right??! But I’m terrified to even consider trying another kind of pill.

I agree, though. I get so frustrated. Mainly at the providers that puts everyone in one bracket. Then, I feel like I’m having to choose between being in pain and my mental health. I want to do a follow-up appointment with my GYN, but am worried that they will be dismissive of me because of my decision 😞

[GreenViolin]

Hi Jessie. I didn’t get on well with the pill or any other hormone treatments, but I did agree to having a Mirena fitted during surgery 14 years ago, because my surgeon explained that having hormones released locally in the area being targeted was far less likely to impact me adversely. He was right, and having the Mirena really helped me in many ways as it stopped my periods which were really controlling my life (lasting 28+ days, really heavy with big clots, severe pain etc).

I have never heard it said that having a coil will stop endo returning though. It certainly didn’t for me - I’ve just had my third and most significant surgery. It didn’t stop the pain when the endo regrew either. I’ve been in constant pain the last couple of years, and am really hoping once I get over this surgery I’ll get some relief for a few years before needing to go through it all again.

[h0lli3]

Hey, I'm in a similar situation to you in terms of timings, diagnosis, severe, bad reaction to pill etc. Waiting for first lap, hopefully this year if waiting lists allow, and have been advised to go straight onto Zoladex to put me into early but reversible menopause while I recover from the surgery and for a few months more, therefore stopping all endo symptoms and it coming back so quickly. After itll be straight into IVF if I want to, coming off the Zoladex. Might be worth asking about Zoladex depending on your future plans. Some people think its great, others not so much, all depends on the person I think.

[meg73]

Hello! I decided not to have the coil put in as had previously had bad experiences. I was actually in more pain when I had the Kyleena in, but found out later it was placed incorrectly, and told that wouldn't likely be a problem if placed during surgery as it can more easily be guided in to the right spot.

After my surgery, I sought out other options for pain relief, like pelvic physiotheraphy and accupuncture which combined with the surgery, has provide me quite a bit of relief. I still do have to take pain killers from time to time and have the occasional day off work, but it isn't as constant. I do think it may be coming back again though as has been slowly getting worse over the past few months (my surgery was two years ago).

I am currently trying to concieve so won't be seeking out hormonal methods, but may trial the coil again in the future if pain gets worse. As said above though, it's worth bearing in mind that there is little to no evidence that this stops the recurrence of endometriosis - just that it relieves symptoms.

[meg73 in reply to meg73]

I will also add that like you, I didn't want hormonal contraception as I had bad experiences with mental health on the pill. I will note that when I had the Kyleena coil in, I didn't find the mental health symptoms or mood swings as bad - I only got it removed because the pain had increased.