What treatments have people tried and what are the associated side effects you have experienced from them?

I like to be fully informed before I make important decisions like this..............I have read up on the various treatments and seen the list of side effects that can occur with each one, but my question to everyone is - what is the actual reality of side effects?

I don't want to be taking something that is gonna make me feel the same or even worse than wot I feel right now

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  • Hi

    I've always suffered with painful periods (every month) since I was 9 years old. I was put on the pill at 12 to control the pain and up until 5 years ago was absolutely fine. Just took the usual paracetamol and Ibuprofen for pain over the first couple of days each month.

    Then everything changed. I've tried the coil which didn't agree with me in the slightest and after a year and a half of been told lose weight and we'll treat you by my gynecologist I ended up in hospital for a week.

    She finally agreed to a course of Zoladex (6 months - 1 injection per month) :)

    All I can say is wow. For the first time for as long as I could remember I was more or less pain free, just the odd twinge every now and again. The bonus of no periods was an added extra.

    Side affects wise I coped with. I think the worst thing was the hot flushes/sweats. Days weren't as bad as nights. My poor husband woke up on many occasion in a wet bed due to me sweating.

    The only other side affect I had was my hips hurt (in the joints). It was mainly after sitting for any length of time at work and first thing on a morning. It just took a bit of getting going. at times I felt like I was about 100 just trying to work.

    I can however say that for me the benefits definitely outweighed the side affects, but everyone is different.

    I have since been offered another course of Zoladex but with a hormone top up as it can affect your joint permanently. Right now a child is more important and Zoladex obviously prevents this, so for now pain killers and my hot water bottle are my best friend again.

    I hope this helps you, it is so difficult to make the decision about what to take and what not to take but as I saw it anything that could get rid of the pain, nausea, bleeding etc was worth a try.

    See ya x

  • Thanks for your response, an issue for me would be that I suffer with really bad hot flushes/fevers anyway with my endo and I get really bad pelvic pains on every inch of my pelvis.

    So I guess that's why I want to investigate the possible side effects so I can weigh up the benefits off pumping myself full of drugs!

    I am very career focused and I am a single mum and I've had endo for 10mths now and the symptoms are starting to wear me down and I don't want to take a drug that will end up wearing me down even more

  • Hi Amy,

    I'll keep this simple for you, so I'll just give you a list of what I've tried:`

    The Pill (Yaz) (3 years)

    Method: Continuous back to back with a break every 3-4 months.

    Side Effects: None to note.

    Pros: Not having a period.

    Cons: Didn't have any effect on the endo and it continued to grow as normal, so was still in a lot of pain.

    Verdict: Didn't do a whole lot to help pain or endo! Worked well as birth control though lol.

    Mirena (6 months)

    Side Effects: Severely aggrivated my PCOS causing hirutism, acne and cysts.

    Pros: Not having a period.

    Cons: Irritated the inside of my womb. Caused a lot of pain. Didn't stop the endo from growing.

    Verdict: Mirena is evil!

    Zoladex (4 months)

    Side Effects: Hot flashes, Night sweats, Fuzzy memory, Joint Pain. (My doc put me on Livial, an add-back HRT to control these and it worked!)

    Pros: Really really helped with pain. I functioned like a normal human being for the length of the treatment, apart from the side effects.

    Cons: It is an injection given with really big needle!! (But my doc gave me an injection of local anaesthetic first to numb the area.) Side effects. Only slowed the endo slightly and couldn't help with adhesion pain.

    Verdict: Definitely worth it for pain relief, despite all the side effects, as these were managed with the HRT.

    Lidocaine 5% Patches

    (These are a patch with a local anaesthetic which are worn on the abdomen 12 hours on 12 hours off)

    Side Effects: None

    Pros: Slightly helps with the pain

    Cons: VERY expensive. You need to have a regular pattern to your day to work the 12hrs on 12hrs off.

    Verdict: They help slightly but it's a pain getting into the routine of wearing them and they're quite big. Worth a try though.

    Amitriptyline 10mg

    (This is actually an anti-depressent but is prescribed to help you get to sleep and get past the pain)

    Side Effects: None for me but I think they can be addictive.

    Pros: None

    Cons: Didn't work.

    Verdict: Don't bother

    Gabapentin 1800mg p/day

    Side Effects: None.

    Pros: Really helps with the pain

    Cons: You have to take a lot of tablets.

    Verdict: Definitely Worth it!

    Ok there ya go, sorry for the long list lol! These are just my experiences and everyone reacts differently to different treatments. The main thing is to find what suits you best. Don't allow your doctor to pressure you into a treatment option that you're not comfortable with. Your doc should work WITH you to help with your pain. All treatments are a stop gap option and none will cure endo. Your best chance at long term relief is to have excision surgery with a specialist. This website explains excision better than I could: endometriosissurgeon.com/

    Good luck with whatever treatment option you choose! xxx

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