Endometriosis, IBS severe mental health and Dienogest

Hi Everyone

I have seen a few posts about this so sorry if I'm repeating things.

I was initially diagnosed with endometriosis when I was 16 told it was attached to my bowel ect, has some scar tissue removed. Fast forward 3 kids later I had my first child at 19 and suffered on and off with very bad periods pains tried coils, pills and injections. During the last 25 years ish (40 now) I have had issues with neuroendocrine tumors in my stomach so got chronic IBS and gastritis. Alongside that my mental health has been so bad got two diagnosis (don't help just labels really). Righ now my mental health is the best it's been for as long as I can remember (found the right man eventually). For about 18 months now I have suffered with chronic endometriosis pains bleeding and hospital trips have taken over my life. Last week I was seen by gynae who put me on dienogest initially I thought oh wow this is actually going to work, but all of the sudden the pain is back with avengance, coinciding with that I have been hit with chronic fatigue. I have a headache that I can't shift and basically feel pretty rubbish and disheartened.I have a three year old and I cant cope with the fatigue and pain anymore I feel like I'm letting her down and can't be the best mam she deserves. This is heartbreaking I'm desperate for relief and help.

Basically my question is can this change so quickly can it go from pain free to it coming back so badly and quickly. This was my last hope.

Is this just a blip in the road or does this happen.

I have asked for a full hysterectomy but they have said I have to try this for

3 months first.

Can anyone recommend anything that can help please with the fatigue and the pain I'm on that many painkillers still I'm like a walking pharmacy.

Thanks for reading

A very desperate mam of a toddler who can't be doing all the suffering again.

xxx

[Cailleach]

Hi, can’t really comment on the Dienogest as I haven’t been on it, maybe have search of old posts on here for more information? It seems that your worsening symptoms might well be related though. Can you contact your Gynae and discuss this, maybe via your GP? Presumably the ‘ try this for 3 months’ is to see if it helps your symptoms to avoid having a hysterectomy. It doesn’t look as if it is helping so why should you have to persist like this for 3 months?

Are you being seen at a specialist endo centre (BSGE)? Given your history of bowel involvement you should be.

Hysterectomy isn’t necessarily a cure. Have you had an MRI scan to assess where the endo is?

I can sympathise with all you are dealing with. Hope you get some help xx

[Cailleach in reply to Cailleach]

I looked Dienogest up and pain and headache are common side effects. So is depression, you do not specify what your mental health issues were but you should be aware that your mood could be affected. Tbh though if you have pain, constant headache and fatigue, your mood will be affected x