Using the pill to help endo pain

[Unicorn777]

I had a lap surgery in January this year to ablate some endo on my uterosacral ligaments.I take the combined pill back to back to avoid having periods or pain, however my pain is flaring up around every 2 months and I usually take the week break from the pill when my pain starts.

I was wondering if anyone has experienced this or has advice on managing this please?

I'm scared if don't take the break that the pain will drag on but I know if I do take the break it is dreadful but at least afterwards I'm ok for around 2 months.

It just never feels like a good time to experiment especially with uni and everything but I'm wondering is there any benefit in taking the break when I'm already in pain?

Has anyone else had the same problem with the pill and how did you manage it?

Is there a better alternative to the pill?

Any advice is so appreciated thanks so much!

[Plantbasedsoutherner]

I'm on back to back pill. I get some flare ups but still continue with it and don't have a break. I've got a endo specialist appointment in a couple of weeks where I hope I'll get more answers on what is right for me. Everyone is different. Good luck

[Unicorn777 in reply to Plantbasedsoutherner]

Aw thank you for sharing this, I hope you get some clarity at your appointment! Sometimes when my pain flares up I'm scared incase it won't go away until I take the break but it's good to know that you can continue to take the pill during a flare up. Thank you!

[OlgaSz]

Hi, I stopped using pill as I had too many side effects, but there are 2 things that helped me with pain: green tea with ginger 3 times a day that i start a few days before my period and drink it for the entire duration of the period. I know it sounds wishy-washy and quack doctor, but there are a lot of studies that back it up. These studies are widely available online.The other thing is daily yoga - I also have Endo on the uterosacral ligament and daily yoga focusing on the pelvis stretches made all the difference. I am currently meds free and almost fully pain free.

I know we are different and what worked for me, doesn't have to work for you, but I hope this will help.

[Unicorn777 in reply to OlgaSz]

Thank you so much for sharing this, I've been trying to give everything a go but these are some new ideas which I could try!

[LME5]

I'm sorry that you're in such pain. The fact that it occurs every 2 months whilst taking the pill back-to-back is cause for concern. The pill mainly works to mask pain. In some cases, the pill has helped keep endo at bay, but for the most part, it is not proven to stop its progression. It may mask symptoms, which of course helps us carry on with our daily lives. With ablation surgery, there is a higher rate of disease and symptom return, as opposed with excision surgery. If you're happy to take the pill as treatment, I would consider trying a different brand. If you decide to change pills, it's worth having at least a month off in between to see how your symptoms are without any treatment. In the meantime, if I were you I would request a follow up MRI from your gynaecologist to assess where you're at post-surgery x

[Unicorn777 in reply to LME5]

Thank you so much for taking the time to reply to me. This is the 2nd combined pill I've been on which I've been taking for almost 2 years now and I've also tried a progesterone only pill which caused nonstop bleeding and I gave it up quite quickly.

Unfortunately this is the best it's been for me with only flaring up every 2 months now since my surgery.

I was discharged from the gynecologist after my surgery in Jan and I haven't contacted my GP about it since other than to get painkillers on repeat prescription.

I felt quite abandoned after the surgery like I have to just deal with it now.

I had asked about stronger painkillers but they are reluctant to give anything more than naproxen and 15/500 cocodamol.

I am open to trying other methods of Contraception to see if it helps but it's very hard to know what might work and it never feels like a good time to experiment.

I would feel quite bad asking for another GP appointment as I'm not sure what they can do for me at this point but when it flares up its very painful for around 10 days every time

[LME5 in reply to Unicorn777]

I understand where you're coming from. Most women feel abandoned as it seems to be common practice to discharge patients post-surgery. That's just NHS protocol - there are only so many patients they can keep on the books. The onus is on you to reach back out to your gynaecologist to inform them that you're still not well. You can do that via your GP, - ask your GP to refer you back to gynaecology for further investigation.

Please don't bad asking for healthcare when you're in pain. It's not normal for you to be suffering so much.

As for hormone treatment, there are hundreds of treatments out there. I understand that it's overwhelming and that starting over with a new drug can lead to an anxious state of mind. But if you're not feeling better on the treatment you're on, you may as well not take any medication. Your gynaecologist should be advising you on alternative hormone treatment to try.

Personally, I've tried at least 10 pills until I landed on ones that suited my body and helped me live a normal life.

I hope you find the mental strength to reach back out to your doctors and ask them to help you find a better solution to your pain. Pain killers have side effects and should not be used long term.

I wish you the best with you endo journey x

[BookBimbles]

I’m the same exactly the same with the pill. I sought a re referral to An endometriosis centre just over a year after my first gynae surgery. And a recent specialist ultrasound showed disease progression since my surgery 2 years ago. I do have codeine prescribed (15 tablets) for just the worst pain. Not tried the green tea though and have been inconsistent with yoga / stretches lately. Next options - another hormonal treatment and / or further surgery