Other treatment options

[Giraffe0210]

I had a diagnostic laparoscopy back in October 2018 which showed stage 2 endo. As mentioned in previous posts I still suffer with horrendous pain (not just around my time of the month), migraines, headaches, sciatic pains, nausea etc the list could go on!

After my op I was put on cerazette and that unfortunately didn’t stop periods or do very much. I went back to the doctors and they then put me on Cerelle. Since being on this birth control I have still had the horrendous pain and more noticeably really bad migraines/headaches! I am looking to go back to the doctors to find another birth control or alternative treatment which I could suggest. If anyone has found one that works well for them, I would love to know as I can’t seem to find much on the internet and I desperately need to find something!!!

[luthien]

Have you had your endo excised via a laparoscopy?

If not then that's the best form of treatment as it removes the endo, plus the surgeon will unstick any organs too.

Endo will keep growing with any hormones you use, so generally they're only used when young, when women need time to decide on a lap, or are not at that point in their life or symptoms aren't too bad. it's far too common for GPs and general gynae specialists to prescribe hormones; they don't stop endo, they may slow it down. In summary we are mammals so we all produce oestrogen in small amounts even males, thus endo will always grow. Hormones work to slow the growth down, which is all some women need.

As you're still having problems during your cycles even on hormones your next step would be a lap with excision of endo. Check out the BSGE website for endo specific surgeons, and centers near you then book in to see one of the; they'll help with the correct form of treatment. Also check out the NICE website Endometriosis , this will give you guidelines that specialist should follow to treat your endo, it specifically states surgery. Just google those to help.

If you'd like to know what happens, and my experience, have a read:

"All this effort does pay off - my story - hope it helps !"

You can find it via my profile or search for it on this page. It may give you an idea of what I went through.

xx

[Giraffe0210]

Hi, thank you for all that information! I should have mentioned in my original post but yes I have had excision surgery during my laparoscopy in October last year!

I was told it would take a little while for things to settle down again but unfortunately I haven’t had any relief from it!! I will have a read🙂xx

[luthien in reply to Giraffe0210]

Ah sorry

It can take up to 4 to 5 months. I had my lap in July 2018 and it took me until Jan to recover properly.

Yours could take a little while longer. Are you sure it's your endo symptoms? You're only 3ish months after your lap. Plus could your hormone tablets be making it all worse? Would a break for a month help to see what's going on? Sometimes your body just needs normal cycles and then it seems to settle and be manageable.

Just thoughts x

[Giraffe0210]

Don’t be sorry my mistake!

That’s true it could be that but as you say it could be the hormone tablets making it worse...

I’m worried to come off them as I am now back at work and I’m concerned that if I stop taking them it will make my pain even worse as I will have a proper period! But you could be right and it could be my body needing the normal cycles..

it’s all so confusing and I don’t really know where to turn, the doctors don’t really understand it and I was discharged from my consultant even when I don’t think I should have been!!

X

[Hidden in reply to Giraffe0210]

It’s interesting that they have put you on different brands of the mini pill both times. Did they explain why? Is there any reason that you can’t have a combined?

I would ask for a referral to a specialist that is registered with BSGE

My problem with hormone treatments is that they bring way too many side effects a lot of similar to Endo and other stuff. I don’t find them worth the risk and as farahiyzia has said, they don’t actually treat anything. But they should have let your body recover naturally after the op rather than stick you on artificial hormones

Sorry honey; you should def ask for specialist input and insist on it. Where in the country are you? X

[Giraffe0210 in reply to Hidden]

It was a nurse who put me on it just to try and see how I get on but she’s not a specialist or anything. They gave me a choice after my op either the mini pill or combined and we agreed on the mini one so I wouldn’t have periods! How wrong I was!

I felt like they just wanted to get rid of me as I’m “only stage 2” which is utter rubbish! I’m from the south east x

[Hidden in reply to Giraffe0210]

I always feel like they are trying to get rid of me. I should say that I haven’t had a lap yet, so my diagnosis is only a “working diagnosis”. I had my first gyne appt a few weeks ago and it was the exact same: “ok, we will do the op, but it’s probably going to be useless if you won’t take hormones” (I’ve was on hormones from the age of 16-27; I’ve tried them all; they all fucked me up - excuse the language).

The stages don’t indicate the level of pain or debilitating effects but you are probably right. There is just such little understanding of it all.

I would def go back to the GP, but before doing so, look up some of the local hospitals & BGSE registered Endo clinics. You can ask your GP for a choose and book referral and make sure they include the ones you have looked up and prefer

As much as I am hesitant to use pain relief for persistent and constant pain, have they given you anything for the pain? X

[Giraffe0210 in reply to Hidden]

I didn’t receive a notification for your reply so I’m sorry I’m a month late!🥺

I don’t understand why they keep trying to put people on hormones even when it does not help! I understand for some people it helps with the symptoms but unfortunately not everyone!

That’s a good idea! Are they private or on the NHS?

They gave me codeine but my body became used to it so had to keep increasing my dose! Now I only keep them when I’m really desperate! I find heat and yoga helps my symptoms but some days I don’t get any relief at all!

Have they given you painkillers? X