Advice request - going in circles with doctors

[Bookworm321123]

Hi all,

I've been suffering with endometriosis for years but I'm really struggling to get proper help with it, and the doctors seem to be thinking now it might be something else.

I've had surgery to remove endometriosis twice (and the second time I also had an ovarian cyst removed which was larger than my ovary and had fused to my abdominal wall. Fun!!). I really thought that surgery would help but nothing got better afterwards.

It's now been two years since my second surgery and I'm still having periods that are totally unpredictable and so, so painful. Generally not super heavy flow.

They've tried me on the pill, the minipill and most recently the contraceptive injection. I had high hopes for the latter as things got quiet for a while, but I've just had a period that lasted 54 days. I've had several injections and a nurse I saw for a check-up on it the other day said it should have settled down well before now.

They offered me the coil but that's the one thing I refuse to try because I have several friends and relatives who've had really awful experiences with it.

I have another doctor's appointment today and I feel like I'm running out of options. Does anyone have any suggestions on alternative endo treatments I could ask for, or if there's some other condition they should check me for?

I've already asked for a hysterectomy but they don't want to at my age (mid-30's) and they said even if they did do that it might not stop endo anyway.

Thank you to anyone who reads this and any help is really appreciated.

[Endofitall]

I just wondered if you’d had a thorough chat about the Mirena and heard from those with positive experiences? If you make the same decision that’s fine but I’d hate you to not have opportunity to try something that works. While some may have poor experiences the vast majority get huge benefit from them. And they’re entirely reversible (unlike a hysterectomy) and if you don’t get on with it then it is usually very straightforward to remove usually in a GP nurse appt.

[Cailleach]

Obviously you’ve been for your appointment and I hope it went well.

The coil does work for a lot of people so, up to you if you choose to go for it.

It would be worth asking for specialist advice on pain relief if that is available, as what you are on is evidently not enough. To be honest, there would be nothing recommended that your GP could not prescribe but often GPs are a bit too cautious about prescribing. However if no pain clinic, or a long waiting list, ask about combinations of pain relief that could help you. For example you can take opiate types such as codeine, anti-inflammatories such as diclofenac and meds for nerve pain such as amitryptyline or Gabapentin.

If it’s tho years since your last surgery, could be worth asking about another scan: ultrasound and or MRI to see what is happening. These are best done by a someone with special training in endo, but that may not be available as an option.

If you are not concerned about fertility, then it is possible to be prescribed hormones to put you into temporary menopause. Some people find this helpful.

It is true that hysterectomy will not necessarily be a cure for endo though.

Hope this helps, might be worth looking a the NICE guidelines on enod for treatment pathways, xx